Health Equity Audit – Diabetic Retinopathy Screening Southampton City, Hampshire, Isle of Wight and Portsmouth City PCTs Dr Simon Fraser Specialty Registrar in Public Health NHS Southampton City Dr Laura Edwards GP Leadership Fellow Hampshire PCT July 2010 Dr Simon Fraser & Dr Laura Edwards July 2010 1 Contents Page Introduction to this Health Equity Audit 3 Acknowledgements 4 Executive summary 5 Background 9 Overview of screening programmes 15 Aims, Objectives, and Methods 17 Results GP data 19 Southampton, South West Hampshire and the Isle of Wight 21 Portsmouth and South East Hampshire 48 North Hampshire 73 Patient experience 88 Limitations of this audit 91 Conclusions and recommendations 92 References 93 Appendices 94 Appendix 1 – List of GP Practices referring to each programme 95 Appendix 2 – Data requested 101 Appendix 3 – Questionnaire 103 Appendix 4 – Descriptive summary of audit process 105 Dr Simon Fraser & Dr Laura Edwards July 2010 2 Introduction to this Health Equity Audit In 2009 the Southampton and South West Hampshire Diabetic Retinopathy Screening programme was one of the first in the country to have a national quality assurance visit. One recommendation from the subsequent quality assurance report was that a Health Equity Audit (HEA) should be undertaken within 6 months. Anyone who has undertaken a robust HEA will know that the timeframe was tight. As chair of this retinal screening programme board I was delighted when Dr Simon Fraser, a SpR in Public Health, asked me if I new of any project work that could be undertaken to meet his learning competencies. Not only has Simon risen to the challenge of leading on this work, I compounded it by getting the agreement of the four Directors of Public Health across Southampton, Hampshire, the Isle of Wight and Portsmouth to extend this HEA to all their respective retinal screening programmes; three HEA’s under one remit. Dr Laura Edwards a GP Leadership Fellow similarly fell into this trap. Gaining good quality validated data has posed challenges with this audit. Whilst the nationally recognised IT systems to call and recall, monitor the patient retinal screening pathway have improved in recent years, data cannot be easily extracted. Currently the IT is not able to generate reports that can effortlessly assist the HEA process. I am therefore indebted to the work of Simon and Laura on this mammoth task and to Dan King who ably assisted with data analysis. Any worthwhile HEA has to result in action. I hope that this work will spur on the commissioners and providers of this important public health service to improve the health of the growing numbers of diabetics who depend on screening to detect and treat retinopathy, ultimately protecting their sight. Dr Graham Watkinson RN, MA, EdD, FHEA, FFPH Consultant in Public Health Trust Headquarters Southampton City PCT Oakley Road Southampton SO16 4GX Tel: 023 80725403 Mob: 07768555689 Email: graham.watkinson@scpct.nhs.uk UKPHR 0209 Website Addresses: www.southamptonhealth.nhs.uk www.southamptonquitters.nhs.uk www.dh.gov.uk/immunisation http://www.screening.nhs.uk/home.htm Dr Simon Fraser & Dr Laura Edwards July 2010 3 Acknowledgements We are grateful to all of the following for their input to this audit, without which it would not have been possible Graham Watkinson, Matthew Smith, Paul Bingham, Clare Simpson, Dan King, Rebecca Wilkinson, Tina Woodcock, Emma Goss, Julia Warner, Steve McInnes, Louise Wells, Hugh Sanderson, Martin Davis Christina Rennie, Roger Smith, David Webb, Fiona McCaul, Sian Wild, Richard Bolton, Bob Coates, Debbie Chase, Mary O’Brien, Harriet Quast, Nigel Hall, Nicola Moss, Nigel Watson, Jill Ghanouni, Dawn Buck, Lee Calladine, Richard Holt, Patrick Sharp, Vicky Boland, Joanne Wigley, Gerry Lewis Julie Parkes, Mayank Patel, Samantha Cockings, Marie Casey. The Wessex Local Medical Committee (LMC) for their support of this project. All GP practices in Southampton, Portsmouth, Isle of Wight and Hampshire and their Practice and IT managers who kindly contributed data. Dr Simon Fraser Dr Laura Edwards Dr Simon Fraser & Dr Laura Edwards July 2010 4 Executive summary Background The National Screening Programme for Diabetic Retinopathy outlines the aim of retinopathy screening as follows: ‘The aim of the programme is to reduce the risk of sight loss amongst people with diabetes, by the prompt identification and effective treatment if necessary of sight threatening diabetic retinopathy, at the appropriate stage during the disease process. Systematic screening involves digital photography of the retina followed by a two- or three- stage image grading process to identify the changes of sight-threatening diabetic retinopathy in the retina.’ 1 Health Equity Audit is a process for identifying how fairly services or other resources are distributed in relation to the health needs of different groups and areas, and the priority action to provide services relative to need Aims & objectives To conduct a Health Equity Audit of the Diabetic Retinopathy Screening Service in Southampton, Hampshire, Portsmouth, and the Isle of Wight. 1. To create an ‘equity profile’ of the diabetic retinopathy screening programmes in Southampton, Hampshire, Isle of Wight and Portsmouth by identifying inequity in provision, access, uptake and outcomes of the service. 2. To use this profile to identify local action to tackle inequity (in partnership with the relevant diabetic retinopathy screening teams). 3. To use these locally identified actions in commissioning decisions and delivery of retinopathy screening services coordinated by the Diabetic Retinopathy Screening Boards. 4. To develop a framework for a structure within which re-audit of the service can occur over time to assess progress against targets and monitor performance. Methods Working in collaboration with the three screening programmes under the direction of a steering group comprising Public Health leads from each of the four PCTS. Creating an equity profile for each of the three screening programmes using data from the screening services, GP practices, the Hampshire Health Record, and a survey of people with diabetes. Results The main results are given below for each of the screening programmes. 1. National Screening Programme for Diabetic Retinopathy. http://www.retinalscreening.nhs.uk/pages/default.asp?id=2 Dr Simon Fraser & Dr Laura Edwards July 2010 5 Southampton, South Hampshire and Isle of Wight Population – There is a predominance of men, and a predominance of Type 2 diabetes, prevalence of which is increasing. Significant areas of deprivation exist, particularly in Southampton City. There is some variation of prevalence of diabetes between GP practices, but most are between 4 and 6%. Programme – IT problems, recognised nationally, provide a challenge for interrogating the data, obtaining information on people registered with the programme, and auditing the programme. Recording of certain data could be improved e.g. type of diabetes, ethnicity. The ability to audit outcomes would be greatly enhanced by being able to follow progress of patients referred into the hospital system. Lack of available data on outcomes is particularly important in context of new NHS white paper. Provision – There appears to be good coverage generally, except for some areas of Southampton with relatively high deprivation levels and population subject to ‘financial stress’ who may not be able to access services so easily. Access – The programme covers a largely mobile population, with a higher proportion of younger people among DNAs. It is possible that this is related to working-hours timing of screening appointments. Consideration should be given to developing screening locations in areas of high daytime population. Uptake – There is a high proportion of DNAs and those with no record of screening in GP records among younger age groups (20 to 50), the very elderly, and people who live in more deprived areas, (particularly younger men from deprived areas). Consideration should be given to optimising screening locations for the elderly. Outcomes – Accurate data is difficult to obtain on outcomes. It is therefore not possible to comment on prevention of loss of vision with the data currently available. This is a priority to rectify as the national programme is built on preventing visual impairment. There is a need for better recording of outcomes in eye units, and improvements in the ability to follow people through the system. Those with no record of screening in GP practices had a high prevalence of hypertension. This emphasises the importance of working with GP colleagues to optimise control of risk factors and encourage engagement with screening. Summary – There is some evidence for inequity of provision of the service in certain areas, though coverage of the service and convenience of access is generally good. There is some evidence, however, that there is inequity of access and uptake particularly affecting younger age groups, the very elderly, men more than women, and those from more deprived areas. There is weak evidence of inequity of outcomes, mainly because of lack of reliable data. Portsmouth and South East Hampshire Population – There is a predominance of men, and predominance of Type 2 diabetes, prevalence of which is increasing. Significant areas of deprivation exist, particularly in Portsmouth City. Programme – IT problems, recognised nationally, provide a challenge for interrogating the data, obtaining information on people registered with the programme, and auditing the programme. Recording of certain data could be improved e.g. type of diabetes, ethnicity. The ability to audit outcomes would be greatly enhanced by being able to follow progress of patients referred into the hospital system. Lack of available data on outcomes is particularly important in context of new NHS white paper. Provision – There is evidence that the location of screening cameras does not match need in terms of prevalence of diabetes and areas of more pronounced deprivation. There are areas of overlap with North Hampshire programme, which raises questions about duplication of effort and offers the potential to work together to improve the service for patients. Access – Access appears to be difficult for some people based on DNAs in relation to location of cameras, and comments from the survey. Consideration should be given to identifying alternative sites for screening that are more convenient for patients. Uptake – Good evidence that a higher proportion of deprived groups DNA. Younger, those in more deprived areas, men, and type 1 diabetics are all more likely to have no record of screening in their GP records. DNA mapping helps to demonstrate the areas of need. Outcomes - Accurate data is difficult to obtain on outcomes. It is therefore not possible to comment on prevention of loss of vision with the data currently available. This is a priority to rectify as the national programme is built on preventing visual impairment. There is a need for better recording of outcomes in Dr Simon Fraser & Dr Laura Edwards July 2010 6 eye units, and improvements in the ability to follow people through the system. Those with no record of screening in GP practices had a high prevalence of hypertension. This emphasises the importance of working with GP colleagues to optimise control of risk factors and encourage engagement with screening. Summary – There is moderate evidence for inequity of provision of the service in certain areas. Evidence that this is associated with inequity of access and uptake particularly affecting younger age groups, the very elderly, men more than women, and strong evidence of inequity of uptake among people from more deprived areas. Weak evidence of inequity of outcomes, mainly because of lack of reliable data. North and West Hampshire Population – There is a predominance of men, and predominance of Type 2 diabetes, prevalence of which is increasing. The commonest affected age group 60 – 75. In contrast to Southampton and Portsmouth, the majority of the population live in less deprived areas. Programme – IT problems, recognised nationally, provide a challenge for interrogating the data, obtaining information on people registered with the programme, and auditing the programme. Recording of certain data could be improved e.g. type of diabetes, ethnicity. The ability to audit outcomes would be greatly enhanced by being able to follow progress of patients referred into the hospital system. Lack of available data on outcomes is particularly important in context of new NHS white paper. Training of screeners and graders is ongoing. Provision – Three areas have been identified where provision does not appear to be matching need – North West of Basingstoke, Fleet/Hartley Wintney, and Alton/Bordon. There are areas of overlap with the Portsmouth and South East Hampshire programme, which raises questions about duplication of effort, and offers the potential to work together to improve the service for patients. Access – The programme has limited screening locations over quite wide geographical area. Signposting and public transport access to Rooksdown could be improved. The location may be a barrier to those without their own transport. Current appointment times may provide a barrier to younger, working age people. Uptake – A higher proportion of younger people and very elderly have no record of screening in the GP record. Reasons for this could be explored further. Biggest numbers of people with no record of screening are in the 50 to 75 age group. Outcomes - Accurate data is difficult to obtain on outcomes. It is therefore not possible to comment on prevention of loss of vision with the data currently available. This is a priority to rectify as the national programme is built on preventing visual impairment. There is a need for better recording of outcomes in eye units, and improvements in the ability to follow people through the system. Those with no record of screening in GP practices had a high prevalence of hypertension. This emphasises the importance of working with GP colleagues to optimise control of risk factors and encourage engagement with screening. Summary – There is moderate evidence for inequity of provision of the service in certain areas. There is evidence that this is associated with inequity of access and uptake particularly affecting younger age groups, the very elderly, and men more than women. There is some evidence of potential inequity through people accessing optometry rather than the screening programme (particularly in older age groups). There is weak evidence of inequity of outcomes, mainly because of lack of reliable data. Patient experience The majority of those surveyed were positive about screening programme. A few areas for potential improvement of the service identified, such as comments about the screening locations in PSEH, the difficulty of making appointments, particularly at hospital clinics, and the need for careful wording of results letters (any abnormality can sound frightening). Weaknesses of the survey process were recognised and more focused patient experience surveys should be considered for each of the programmes. Dr Simon Fraser & Dr Laura Edwards July 2010 7 Conclusions This health equity audit has identified patient factors (such as the groups of people at most risk of retinopathy, those less able to access and take up the opportunity for retinal screening), provider factors (such as the need to reconsider the location and timing services to improve accessibility, and the need for recording of important dimensions of equity), and system factors (such as the weaknesses of the current IT systems, and geographical overlap between individual screening programmes). We therefore make the following recommendations for the screening programmes Recommendations for all programmes • IT issues – recommendation to lobby national programme for improvements in IT system in order to be able to query the database and more easily obtain information on people at each stage of the system. • Need to improve recording of important dimensions of potential inequity in order to be able to re audit, for example improving type of diabetes and ethnicity recording. • Need to improve the facility and uptake of recording of outcomes in the eye units, and seek IT solutions to be able to link data from the screening service to the eye units and vice versa. Linkage with GP systems has been demonstrated by the Hampshire Health Record, who may therefore be well placed to be involved in this process. • Consideration should be given to timing of appointments to make screening more accessible to those in employment. • Consideration should be given to location of services – particularly in Portsmouth and North Hampshire, where the static cameras limit screening locations and potentially reduce accessibility. • Consideration should be given to methods for targeting particular groups who have been shown to have a higher chance of not being screened – particularly men, the young and the very elderly, and those from more deprived areas • Consideration should be given to awareness raising among GP practices of those with no record of retinal screening in order to combat an ‘inverse care law’ effect in this population. This audit has shown that there are examples of good practice in each of the three screening programmes in Hampshire and the Isle of Wight. There is therefore potential to learn from one another and for consideration to be given for a more coordinated, centralised, screening programme across SHIP with adequate funding for IT and admin support. Dr Simon Fraser & Dr Laura Edwards July 2010 8 Background Health equity audit - definition Health Equity Audit is a process for identifying how fairly services or other resources are distributed in relation to the health needs of different groups and areas, and the priority action to provide services relative to need. 2 Equity is best thought of as ‘fairness’ (as opposed to equality, which is ‘same’) and can be divided into ‘horizontal equity’ (equal resources for equal need) and ‘vertical equity’ (unequal resources for unequal need i.e. greater need attracts more resources). In considering equity of a health service, it refers to all of the following: • • • • Provision of the service Access to the service Uptake of the service Outcomes of the service Health equity audit – purposes The purposes of conducting a health equity audit have been described as 1. Informing commissioning of services by identifying groups currently underserved, not accessing or utilising services or for whom the clinical outcome is particularly poor. 2. Contributing to performance management of services by providing robust evidence about whether needs are being met and informing the development of local health inequalities targets. 3. Supporting partnership working by providing a common inequity framework for local strategic partnerships. 4. Informing allocation of resources according to need 5. Encouraging community involvement in the NHS. 3 Health Equity audit – process There are six well-recognised stages in conducting a health equity audit. These are shown in Fig 1. Fig.1 The Health Equity Audit Cycle. 2 6 Review progress and impacts against targets 5 Secure changes in investment and service delivery 1 Agree priorities and partners 4 Agree local targets with partners 2 Equity profile: identifying the gap 3 Identify local action to tackle inequalities 2. Health Equity Audit – a guide for the NHS. Department of Health. Dec 2003. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4084138 3. Health Equity Audit made simple. A briefing for Primary Care Trusts and Local Strategic Partnerships. Health Development Agency. Working document January 2003. Available at: http://www.nice.org.uk/aboutnice/whoweare/aboutthehda/hdapublications/health_equity_audit_made_simple.jsp Dr Simon Fraser & Dr Laura Edwards July 2010 9 Health equity audit therefore needs to answer the following questions: • • • • • • • • • What are the significant equity issues in relation to provision/access to services, facilities and the determinants of good health? What are the known health inequalities for a particular population group or area? Which of these are priorities for action? What programmes already exist which might help reduce the inequities? Are there any relevant national targets? Should a local target be set? What further action can be taken by existing public services or through more targeted action with key groups and areas? Have resources been reallocated to take the most effective action? Has there been any impact on the inequities targeted?3 Dimensions of equity In order to define what is being measured, there is a need to consider equity in several domains. This includes gender, age, ethnicity, socioeconomic status, deprivation, area of residence and vulnerable groups such as those with physical or learning disabilities, and the elderly. Dr Simon Fraser & Dr Laura Edwards July 2010 10 Diabetes Diabetes is a common chronic condition in which the body cannot regulate control of glucose and the amount of glucose in the blood is therefore too high. This happens because the pancreas does not produce enough of the hormone insulin (or the insulin that is produced doesn’t work properly (known as insulin resistance) which normally controls glucose metabolism by helping glucose enter the body’s cells, where it is used for energy. Glucose comes from digesting carbohydrate from various kinds of food and drink, including starchy foods such as breads, rice and potatoes, fruit, some dairy products, sugar and other sweet foods. There are two main types of diabetes: • Type 1 diabetes • Type 2 diabetes. Type 1 diabetes develops when the body is unable to produce any insulin. Usually it appears before the age of 40, often in childhood. It is treated with insulin either by injection or pump, a healthy diet and regular physical activity. Type 2 diabetes develops when the body doesn’t produce enough insulin or the insulin that is produced doesn’t work properly. Usually it appears in people aged over 40, though it can affect younger age groups. It is becoming more common in children and young people of all ethnicities. Type 2 diabetes is treated with a healthy diet and regular physical activity, but medication and/or insulin is often required. 4 Diabetic retinopathy There are a number of potential complications of diabetes, which are more likely to occur if control of the blood sugar is not optimal. One important complication is diabetic retinopathy, of which there are two main types: background (non-proliferative) and proliferative. In background diabetic retinopathy, small vessels in the retina (at the back of the eye) become blocked and damaged. This can result in the damaged vessels leaking small amounts of blood and the retina being starved of oxygen. If enough blood vessels become blocked, new vessels start to grow within the eye in an attempt to provide oxygen to the damaged retina. This is proliferative retinopathy. These new vessels are weak and can bleed and/or pull the retina off the back of the eye (retinal detachment) resulting in loss of vision. Lastly, loss of vision can occur if the centre of the retina, known as the macula, is affected by diabetic retinopathy. This is known as maculopathy. Many patients are asymptomatic until the disease is advanced. Screening is therefore required to identify patients at risk. 5 4. 5. What is diabetes? Information from Diabetes UK. http://www.diabetes.org.uk/Guide-to-diabetes/Introduction-todiabetes/What_is_diabetes/ A Needs Assessment of Diabetic retinopathy screening in Southampton City Primary Care Trust (SCPCT) area. Dr D Chase, January 2008. Dr Simon Fraser & Dr Laura Edwards July 2010 11 Examples of digital retinal images from the Southampton, South West Hampshire and Isle of Wight screening programme. Figure 2 Pre-proliferative retinopathy Figure 3. Proliferative retinopathy Figure 4. Maculopathy Dr Simon Fraser & Dr Laura Edwards July 2010 12 Diabetic retinopathy screening There is a national screening programme that aims to reduce the risk of loss of vision in people with diabetes by early detection and treatment of retinopathy. Screening involves digital photography of the retina and subsequent treatment involves laser photocoagulation of the new blood vessels.1 Literature evidence on retinal screening and equity A cross sectional study of data from the Bradford Low Vision Register in 2002, which analysed clinical and demographic characteristics of those registered, showed that, among Asians, diabetes formed a higher proportion of cause of blindness than among Caucasians (26.1% vs. 7.8%, confidence intervals not given). 6 A Dutch study compared the degree of microvascular complications of diabetes at time of diagnosis among those whose diabetes was diagnosed in General Practice and those whose diabetes was identified through a targeted screening programme. This included presence of diabetic retinopathy. Diabetic retinopathy was found in 7.6% of the screened group compared to 1.9% of the GP diagnosed group, however the confidence intervals were 4.6-12.4 and 0.3-9.8 respectively and the difference between groups is therefore not significant at the 5% level. 7 An equity audit of retinopathy screening in South East London showed that attendance rates for screening were lower among younger patients, those with Type 1 diabetes, and among those residing in areas with higher levels of deprivation. They also found that older patients, those with Type 1 diabetes and those born abroad were more likely to present with diabetic retinopathy. 8 A review of the US literature concerning differences in retinopathy screening among racial and ethnic minority populations identified three groups of barriers to screening: • Patient-level factors, such as lack of education about retinopathy and treatment availability, noncompliance/refusal of the service, lack of access to care, and patient-provider communication (such as language issues, health literacy, and trust). • Provider-level factors, such as lack of awareness of screening guidelines, communication issues with patients, time limitations, and primary care referral patterns. • System-level factors, such as understaffing of eye units, obtaining diagnostic imaging, and long waiting times for appointments. As a result of this, the authors recommend various interventions at each level to reduce inequity in provision, access, uptake and outcomes. These include addressing education of patients and primary care providers, electronic record prompts, and mobile screening. 9 6. Pardhan S, Mahomed I. The clinical characteristics of Asian and Caucasian patients on Bradford’s Low Vision Register. Eye 2002; 16: 572-576. 7. Spijkerman AMW, Dekker JM, Nijpels G, Adriaanse MC, Kostense PJ, Ruwaard D, Stehouwer CDA, Bouter LM, Heine RJ. Microvascular Complications at Time of Diagnosis of Type 2 Diabetes Are Similar Among Diabetic Patients Detected by Targeted Screening and Patients Newly Diagnosed in General Practice. The Hoorn Screening Study. Diabetes Care 2003; 26(9): 2604-2608 8. Millett, C, Dodhia H. Diabetes retinopathy screening: audit of equity in participation and selected outcomes in South East London. Journal of Medical Screening 2006; 13(3): 152-5. 9. Nsiah-Kumi P, Ortmeier SR, Brown AE. Disparities in Diabetic Retinopathy Screening and Disease for Racial and Ethnic Minority Populations – A Literature Review. Journal of the National Medical Association 2009; 101(5): 430-437 Dr Simon Fraser & Dr Laura Edwards July 2010 13 A Health Equity Audit of the Diabetic Retinopathy Screening Programme in NHS Wirral identified that uptake of retinopathy screening at GP practice level was inversely related to GP practice deprivation score. In this region, screening is provided by community optometrists. 10 A Diabetic Retinopathy Screening Programme in Derbyshire improved access to the service by improved marketing techniques and targeting areas of high diabetes prevalence. In addition to this, the programme identified gaps in provision and redistributed their screening cameras accordingly, and improved availability of appointment times, telephone booking of appointments, and consideration of the specific needs of ethnic groups. 11 A study of patients’ records from the Southampton Diabetic Retinopathy Screening service in 2002 showed no significant difference in a measure of deprivation (mean Townsend score) in people with and without diabetic retinopathy at first screening after diagnosis of Type 2 diabetes. 12 A cross sectional study in the west of England investigated socioeconomic variations in diabetes prevalence, uptake of screening for diabetic retinopathy, and prevalence of diabetic retinopathy. This study showed that diabetes prevalence increased with quintile of deprivation, and the likelihood of having been screened for retinopathy decreased. The prevalence of sight-threatening retinopathy was associated with deprivation, but non sight-threatening retinopathy was not. 13 10. Farrington E. Wirral Digital Diabetic Retinopathy Screening Programme Health Equity Audit. Aug 209. http://info.wirral.nhs.uk/document_uploads/Publications/DigitalDiabeticRetinopScreenEquitAudit_d37e6.pdf . Accessed March 2010 11. Improving Access to Derbyshire Diabetic Retinopathy Screening Services http://www.retinalscreening.nhs.uk/userFiles/File/DERBYSHIREStaff%20Celebration%20Event%202007%20Poster%20fin al%20.pdf Accessed March 2010 12. Litwin AS, Clover A, Hodgkins PR, Luff AJ. Affluence is not related to delay in diagnosis of Type 2 diabetes as judged by the development of diabetic retinopathy. Diabetic Medicine 2002; 19(10): 843-846 13. Scanlon PH, Carter SC, Foy C, Husband RFA, Abbas J, Bachmann MO. Diabetic retinopathy and socioeconomic deprivation in Gloucestershire. J Med Screen 2008;15:118-121 Dr Simon Fraser & Dr Laura Edwards July 2010 14 Diabetic Retinopathy Screening Programmes in Hampshire and the Isle of Wight There are three diabetic retinopathy screening programmes that provide screening for the population of Hampshire and the Isle of Wight. These are the Southampton, South West Hampshire and Isle of Wight screening programme, the Portsmouth and South East Hampshire screening programme, and the North Hampshire screening programme (provided by the Salisbury and Wiltshire programme). The total population of people with diabetes registered with all three programmes is approximately 81,000. Southampton, Hampshire and Isle of Wight Retinal Screening Programme The Southampton, South West Hampshire and Isle of Wight programme covers a geographical area that includes Southampton city, southern Hampshire (including Winchester, Romsey and the South Eastern portion of the New Forest), Andover, and the Isle of Wight. The list of GP practices and their associated Primary Care Trusts that refer patients to the programme is given in Appendix 1 In Southampton, South West Hampshire and the Isle of Wight, diabetic retinopathy screening is provided by the service operating from Southampton which delivers screening via five mobile screening units which visit GP surgeries to see patients from that practices list of diabetic patients. There is also facility for patients to visit the screening van at neighbouring practices if this is more convenient, if the van does not visit their practice, or if they have missed the screening opportunity at their own practice. Screening is conducted every 12 months for the majority of patients, more frequently in pregnancy or if possible retinopathy is detected. Screening can also occur at the static cameras located at the Royal South Hants hospital in Southampton and St Mary’s Hospital Newport on the Isle of Wight. Portsmouth and South East Hampshire Retinal Screening Programme The Portsmouth and SE Hampshire service covers a geographical area that includes Portsmouth City and South East Hampshire (including Fareham. Gosport, Havant, Hayling Island, Petersfield, and the Locks Heath area) Screening is delivered via static cameras in five locations: • St Mary’s NHS Treatment Centre, Portsmouth • Gosport War Memorial Hospital • Emsworth Victoria Cottage Hospital • Sylvan Clinic, Coldeast Hospital • Petersfield Community Hospital Secondary grading occurs at Queen Alexandra Hospital, Cosham North Hampshire Retinal Screening Programme The North Hampshire service covers a geographical area that includes Basingstoke, Aldershot, and Alton in the Northern part of Hampshire, but also north western parts of the New Forest, including Ringwood and Fordingbridge. Screening is delivered via two static cameras located in Rooksdown Surgery (Park Prewitt Medical Centre, Basingstoke), and at Aldershot Centre for Health. There is a current proposal for an additional camera, which would be used at Bordon and Alton. The part of the service in the west of Hampshire is covered by a screener visiting GP practices (an extension of the South Wiltshire service). The maps on the following page show the areas of coverage and overlap between the screening programmes, and the location of GP practices referring to each programme. Dr Simon Fraser & Dr Laura Edwards July 2010 15 Figure 5. Map of Hampshire and the Isle of Wight showing the coverage of the three diabetic retinopathy screening programmes and geographical areas of overlap. Figure 6. Map of Hampshire and the Isle of Wight showing locations of GP surgeries referring to each of the retinopathy screening programmes. Dr Simon Fraser & Dr Laura Edwards July 2010 16 Aims, Objectives, and Methods of this Health Equity Audit Aim To conduct a Health Equity Audit of the Diabetic Retinopathy Screening Service in Southampton, Hampshire, Portsmouth, and the Isle of Wight. Objectives 1. To create an ‘equity profile’ of the diabetic retinopathy screening programmes in Southampton, Hampshire, Isle of Wight and Portsmouth by identifying inequity in provision, access, uptake and outcomes of the service. 2. To use this profile to identify local action to tackle inequity (in partnership with the relevant diabetic retinopathy screening teams). 3. To use these locally-identified actions in commissioning decisions and delivery of retinopathy screening services coordinated by the Diabetic Retinopathy Screening Boards. 4. To develop a framework for a structure within which re-audit of the service can occur over time to assess progress against targets and monitor performance. Methods Agreeing priorities and partners A steering group was formed which comprised the Public Health retinopathy screening leads from Southampton, Hampshire, Isle of Wight and Portsmouth, the GP leadership fellow and the SpR in Public Health. Meetings were held on a monthly basis to guide the priorities of the equity audit and provide support within the individual PCTs. Creating an equity profile The dimensions of equity of interest were identified as: • Gender • Age • Type of diabetes • Ethnicity • Area of residence • Deprivation • GP practice The measures considered by the audit include: a. Provision – how and where is the service delivered? b. Access – how easy is it for the right people to use it? c. Uptake – do the right people actually use the service? d. Outcomes - does the service achieve its aims in reducing the risks and complications of diabetic eye disease? (To include proxy outcomes of screening – referral for laser treatment, stage of retinopathy at referral etc as well as visual impairment and blindness where possible) Data sources were identified which could provide information from the perspectives of the screening programmes, general practices, and from patients using the programmes: • General Practice data was obtained from three sources. 1. MiQuest queries (proactive, bespoke searches of the individual practices’ electronic patient databases for information related to diabetes) 2. Quality and Outcomes Framework data. 3. The Hampshire Health Record. The Hampshire Health Record (HHR) is a local combined electronic health record that brings together information from different parts of the NHS in Hampshire (see figure below). Dr Simon Fraser & Dr Laura Edwards July 2010 17 • • Retinopathy screening programmes data. This was obtained from the Southampton, South West Hampshire and Isle of Wight screening programme, the Portsmouth and South East Hampshire screening programme, and the North Hampshire screening programme. Questionnaire surveys were undertaken of people with diabetes at a Diabetes Wellness event and the Southampton Mela Festival. (see Appendices for details of the data extracted) Data analysis was undertaken for each of these data sources using the measures outlined above to create an equity profile for each of the screening programmes. Identifying local action to tackle inequity Recommendations are made on the basis of this equity profile Summarising key equity issues by Screening Programme area: • Southampton, South West Hampshire and Isle of Wight screening programme • Portsmouth and South East Hampshire screening programme • North Hampshire screening programme. Agree local targets with partners & Securing changes in investment and delivery The process of implementing any changes recommended by this health equity audit will be through the retinopathy screening programmes boards and other existing structures Review progress and impacts against targets This report provides a framework that can be used in the future to re-audit the programme and assess the success of the implemented changes. Recommendations are made for key equity measures and data sources for ongoing surveillance and re-audit, and for a mechanism by which this can occur. Dr Simon Fraser & Dr Laura Edwards July 2010 18 Results GP data A total of 234 GP practices refer people with diabetes to the three retinopathy screening programmes (112 to the Southampton, South West Hampshire and Isle of Wight programme, 74 to the Portsmouth and South East Hants programme, and 48 to the North Hants programme). Of these, 157 practices that do not currently feed data to the Hampshire Health Record were requested to undertake a bespoke Miquest search of their electronic database. 131 practices returned data (an overall response rate of 83.4%). 75 practices’ data was obtained from the Hampshire Health Record. For the Southampton, South West Hampshire and Isle of Wight programme, 67 of the 112 practices (59.8%) were asked to conduct the Miquest searches and all (100%) returned the requested data. 42 practices’ data for this programme were obtained from the Hampshire Health Record. For the Portsmouth and South East Hampshire programme, 57 of the 74 practices (77%) were asked to conduct the Miquest searches and 42 (73.7%) returned the requested data. The remaining 17 practices’ data for this programme were obtained from the Hampshire Health Record. For the North Hampshire programme, 33 of the 48 practices (68.8%) were asked to conduct the Miquest searches and 22 (67 %) returned the requested data. The remaining 15 practices’ data for this programme were obtained from the Hampshire Health Record. However, it became apparent that some of the data requested was not available on the Hampshire Health record (HHR). The histogram below therefore shows a summary of the data on which this audit is based Figure 7. GP data sources for the Health Equity Audit The total population of people with diabetes registered with the three screening programmes in Hampshire and the Isle of Wight is approximately 81,000 people. The total population of people with diabetes identified from the two methods of obtaining GP data was approximately 71,100 people. The discrepancy between these two figures is attributed to incomplete data obtained via the Hampshire Health Record. It is recognised that there are some limitations with the timely uploading of data to the Hampshire Health record, which leads to incomplete records from some surgeries. This is taken into consideration in the analysis of the results of this audit. GP level data was therefore available for 35,183 people registered with GP practices that refer to the Southampton, South West Hampshire, and Isle of Wight screening programme, 20,867 people registered Dr Simon Fraser & Dr Laura Edwards July 2010 19 with practices that refer to the Portsmouth and South East Hampshire screening programme, and 14,051 people registered with practices that refer to the North Hampshire screening programme. It is worth noting that there were a number of records that had missing or invalid postcodes, which could therefore not be matched to a lower super output area and are therefore excluded from the maps: Southampton, South West Hampshire and Isle of Wight: 405 out of 39457 = 1.03% Portsmouth and South East Hampshire: 102 out of 24774 = 0.41% North Hampshire: 132 out of 16673 = 0.79% Dr Simon Fraser & Dr Laura Edwards July 2010 20 Southampton, South West Hampshire, and Isle of Wight Diabetic Retinopathy Screening Programme Dr Simon Fraser & Dr Laura Edwards July 2010 21 Description of the population There are approximately 39,500 people registered with the Southampton, South West Hampshire and Isle of Wight diabetic retinopathy screening programme in total (the number varies because new people are referred to the programme, some people are seen for eye problems elsewhere and are temporarily or permanently lost to screening follow up within the programme, and some move away from the area or die). The active programme size as at September 2009 was 30,300. A simplified schema of the care pathway is shown below: Age and gender The age and gender distribution of those registered with the programme are shown in the two charts below. They show that there are more men than women registered with the programme, that largest proportion of men are between 60 and 80,and the largest proportion of women are between 70 and 85. (Screening commences at 12 years of age, but some practices refer all diabetic people to the programme, even at young ages). Dr Simon Fraser & Dr Laura Edwards July 2010 22 Figure S1. Age and gender distribution using data from the Southampton, South West Hampshire, and Isle of Wight screening programme Age and gender distribution of people registered with the Southampton Hampshire and Isle of Wight Diabetic Retinopathy Screening Programme 3500 3000 Number 2500 2000 1500 1000 500 Male Female 105+ 95 to 99 100 to 104 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 5 to 9 10 to 14 0 to 4 0 Unknown Figure S2. Population pyramid showing proportions of each age group and gender registered with the Southampton, South West Hampshire, and Isle of Wight screening programme Population pyramid of people registered with the Southampton, South West Hampshire, and Isle of Wight Retinopathy Screening Programme 105+ 100 to 104 95 to 99 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 age group 65 to 69 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 10 to 14 5 to 9 0 to 4 10.00% 8.00% 6.00% 4.00% 2.00% 0.00% 2.00% 4.00% 6.00% 8.00% percentage of people Male Female For male and female combined: Mean age = 66, Median = 68, Range = 0 – 105yrs, Interquartile range 57 – 78 Dr Simon Fraser & Dr Laura Edwards July 2010 23 Diabetes type Type of diabetes has not always been routinely recorded within the screening programme, although recording practices are improving and limitations of the electronic database and software are also being addressed. Information of type of diabetes, therefore comes from General Practice data, where recording of type of diabetes is a requirement under the Quality and Outcomes Framework. (It should be remembered that the numbers are less in the GP data because of the lack of completeness of data from the Hampshire Health record). It is noticeable that by far the majority of the burden of diabetes in the population is from Type 2 diabetes. Figure S3. Distribution of type of diabetes from Southampton, South West Hampshire, and Isle of Wight GP data Deprivation The population registered with the programme comes from a wide variety of socio-demographic backgrounds. One way of expressing this is to look at rankings of the Index of Multiple Deprivation (IMD 2007) - a deprivation index at a small area level known as Lower Super Output Areas (LSOAs). LSOAs have between 1000 and 3000 people living in them with an average population of 1500 people. In most cases, these are smaller than wards, thus allowing the identification of small pockets of deprivation. The IMD combines a number of factors covering a range of health, economic, social and housing issues into a single deprivation score for each small area in England. There are 32,482 LSOAs in England. The LSOA ranked 1 by the IMD 2007 is the most deprived and that ranked 32,482 is the least deprived. A common way to summarise IMD ranking is to divide the ranks into quintiles and deciles, in other words to describe ‘the most deprived 20% or 10%’ and ‘the least deprived 20% or 10%’. Southampton City PCT rank of average Index of Multiple deprivation is 70th out of 152 PCTs (compared to Portsmouth 71st and Hampshire 147th, where 1 is most deprived and 152 least deprived). The chart below shows the number and gender of people registered with the Southampton, South West Hampshire and Isle of Wight screening programme who live in each of the 10 national deciles of multiple deprivation (where 1 is most deprived and 10 is least deprived). Dr Simon Fraser & Dr Laura Edwards July 2010 24 Figure S4. Index of Multiple Deprivation distribution for those registered with the Southampton, South West Hampshire, and Isle of Wight screening programme Gender distribution of IMD among people registered with the SHIOW DRS prgramme 4500 4000 Number of people 3500 3000 2500 Male 2000 Female 1500 1000 500 10 9 8 7 6 5 4 3 2 1 No t re co rd ed 0 IMD decile (1 = most deprived, 10 = least deprived) This shows that the majority of people registered with the Southampton, South West Hampshire and Isle of Wight screening programme live in areas that are not among the most deprived in the country. However, there are still several thousand people in the programme who do come from more deprived areas, so this remains an important dimension of equity to consider for this screening programme. 16% of those registered with the programme live in areas within IMD deciles 1, 2, and 3, and 41% live in areas within IMD deciles 8, 9, and 10. Diabetes prevalence The two charts below show the variation in prevalence of diabetes registered with practices in Southampton and the Isle of Wight (areas for which GP data returns were complete). Figure S5. Diabetes prevalence in Southampton City GP practices Dr Simon Fraser & Dr Laura Edwards July 2010 25 Figure S6. Diabetes prevalence in Isle of Wight GP practices Ethnicity Recording of ethnicity data is incomplete in many NHS contexts, and ethnicity definitions vary between organisations and between different years of the national census. Despite these limitations, there is an impression that ethnicity information is being more routinely collected, and ethnicity and language issues may be important in terms of equity. The GP data requested therefore included a search for ethnicity status. For practices referring to the Southampton, South West Hampshire, and Isle of Wight programme, a summary of this information for the main groups for which data was recorded is given below: Table S1. Ethnicity recording in Southampton, South West Hampshire, and Isle of Wight GP practices Ethnic group Not recorded White British White other Indian Other Asian Black African Black Caribbean Number 21593 9975 1779 371 337 77 59 Proportion of total 61.37% 28.35% 5.06% 1.05% 0.96% 0.22% 0.17% It can be seen from this that, for the majority of people registered with the screening programme, ethnicity information is not recorded. This makes it difficult to draw conclusions about equity between ethnic groups in the analysis of the data in this audit. Dr Simon Fraser & Dr Laura Edwards July 2010 26 Provision The mobile screening units visit the majority of GP surgeries in Southampton, South West Hampshire, and the Isle of Wight. Technical reasons, such as the need for a flat, level parking surface with access to a power supply, limit the ability of the screening vans to access all GP premises in the screening catchment area. For those practices that are not able to host the mobile screening unit, diabetic patients are screened at neighbouring practices. Figure S7. Proportion of Southampton, South West Hampshire, and Isle of Wight programme GP practices visited by the screening van Diabetic retinopathy screening service. Proportion (and numbers) of practices attended / not attended by the screening van 100% 80% Attended by van 60% Not attended by van (temporary) 40% Not attended by van 20% 0% Hampshire Isle of Wight Southampton City Attended by van 41 11 35 Not attended by van (temporary) 3 0 0 Not attended by van 11 6 4 The map below shows the distribution of screening locations in Southampton with the associated numbers of people registered with the screening programme. It can be seen from this map that there is good coverage of the city by screening units. However, there are areas of the city with relatively high prevalence of diabetes that are less well served by the screening vans (for example Sholing and Weston Common). Dr Simon Fraser & Dr Laura Edwards July 2010 27 Figure S8. Map of screening locations and numbers of patients in Southampton City registered with the Southampton, South West Hampshire, and Isle of Wight screening programme The maps below show the distribution of screening locations across the whole programme with the associated registered population of people with diabetes, and the map for the Isle of Wight. Dr Simon Fraser & Dr Laura Edwards July 2010 28 Figure S9. Map of Screening locations and numbers of patients registered with the Southampton, South West Hampshire, and Isle of Wight screening programme The map of the Isle of Wight suggests that the population in the far south and west of the island may be relatively underserved in terms of screening locations. However, uptake appears to be good for all surgeries. Figure S10. Map of screening locations and numbers of patients in the Isle of Wight registered with the Southampton, South West Hampshire, and Isle of Wight screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 29 Access Access to the screening service is determined by several factors including the geographical location of services, the timing of service provision, and the mobility of the population served. As described above, the Southampton, South West Hampshire, and Isle of Wight screening programme sees the majority of patients at their own GP surgery in mobile screening units, thereby reducing travel time and increasing convenience for patients. Thirty patients are normally screened in a day. Screening appointment times vary between Southampton City, Hampshire, and the Isle of Wight to accommodate the differences in travel, and to allow for other local issues. Screening in Southampton starts at 9:20am and the final patient arrival time is 3.40pm. Screening on the Isle of Wight commences at 9am and concludes just after 3pm. Screening in Hampshire starts at 9:50am to account for travel and the final patient arrival time is 3.40pm. Each patient take 20mins approx and three people are booked together at 5-minute intervals to give time for visual acuity, administration checks and administer eye drops (which take approximately 20 minutes to work). Wheelchair patients have two slots, which reduces the total number seen in a clinic. Screening also takes place four prisons: HMP Winchester, and the three prisons on the Isle of Wight. In Winchester prison, 8 – 10 people are screened per session / quarter and the Isle of Wight has about 178 patients, who are seen through the year at a rate of one session each month. The screening programme identifies that sessions conducted in the prisons are very resource hungry and take considerable planning. The staff of the programme work effectively despite some system challenges. For example current access issues have focused on technical problems with the telephone system (which understandably been frustrating for patients trying to book appointments). Southampton City Primary Care Trust commissioned Experian Ltd to map the locations of diabetic registered with the screening programme using the Mosaic software, which allows determination of 10 minute walking zones around screening locations. In addition, it allocates characteristics to groups within the population to better describe population types. An example of these can be seen in the maps below. People who live outside a 10 minute walking distance of a screening programme location may be less able to access the screening service and the Mosaic profiles suggest that some people in this group may suffer financial stress which may also reduce the ability to access services. Experian estimate that approximately 35% of the population registered with the screening programme live outside a 10 minute walk time from a GP surgery that is visited by the screening van. Figure S11. Mosaic map showing population living outside a 10 minute walking distance from a GP surgery in Southampton City Dr Simon Fraser & Dr Laura Edwards July 2010 30 An explanation of the population profiles (segments) is given below Segment Name Segment 1 Financially secure older couples living in owner occupied bungalows Segment 2 Elderly singles with low mobility, reliant on public services for support Segment 3 Low income older couples approaching retirement, living in low rise council housing Segment 4 Childless, young, high rise council tenants with issues of social isolation Segment 5 Vulnerable young families or lone parents living on council housing estates Segment 6 Middle-aged owner occupiers making good use of public services Segment 7 Ethnically diverse private renters in older terraced properties Segment 8 Middle aged couples & families in right-to-buy homes Segment 9 Comfortably-off, self serving families who lead active yet busy lifestyles Segment 10 Young couples, new to the area, in privately rented purpose-built flats Segment 11 Students living in shared houses or flats near to the city centre Segment 12 Transient young singles with weak support networks, living in a mixture of housing Segment 13 Young, active students living with like-minded people in halls of residence Segment 14 Affluent professionals living in large detached properties out of the city centre Segment 15 Well qualified, young professionals living in purpose-built waterside locations Figure S12. Mosaic map showing percentage of population with ‘financial stress’ who live outside a 10 minute walking distance from a GP surgery that hosts retinopathy screening. (Financial stress was defined as those from a TGI survey that answered they “Find it very difficult to live on income”. The TGI survey is a continuous survey of consumer usage habits, lifestyles, media exposure, and attitudes). Dr Simon Fraser & Dr Laura Edwards July 2010 31 In addition to this information, modelling work done by Geographers at the University of Southampton gives interesting insights into the distribution of the population during daytime working hours. An example is shown below. This work suggests that, in the context of a medical service trying to maximise ease of access and uptake such as the screening programme, the daytime location of patients should be considered. Further modelling work, in conjunction with the University, specifically for the population of people registered with the screening programme, may therefore be informative in the future. Figure S13. 2am: residential “night-time” model of population distribution in Southampton; considerable goods vehicle traffic on motorway & trunk roads Figure S14. 9am: workplaces, educational institutions, “daytime” model; low residential; very high central densities; peak traffic volume 14 14. Cockings S, Martin D, Leung S, Population24/7: space–time specific population surface modelling. Acknowledgements: Employee data from the Annual Business Inquiry Service, National Online Manpower Information Service, licence NTC/ABI08-P0128. Office for National Statistics 2001 Census: Standard Area Statistics (England and Wales): ESRC Census Programme, Census Dissemination Unit, Mimas (University of Manchester). National Statistics Postcode Directory Data: Office for National Statistics, Postcode Directories: ESRC Census Programme, Census Geography Data Unit (UKBORDERS), EDINA (University of Edinburgh). Quarterly Labour Force Survey, Economic and Social Data Service, usage number 40023. MasterMap ITN layer: © Crown Copyright/database right 2009, an Ordnance Survey/EDINA supplied service. AADF Data: © Crown Copyright, Department for Transport's Great Britain Road Traffic Survey. EduBase School Data: © Crown Copyright, Department for Children, Schools and Families. Students in Higher Education Institutions 2005/06 Copyright © Higher Education Statistics Agency Limited 2007. Hospital Episode Statistics Copyright © 2005-2010, Health and Social Care Dr Simon Fraser & Dr Laura Edwards July 2010 32 Uptake A summary of activity of the screening programme over the last few years is given by the table below: Table S2. Trends in numbers of people offered screening in Southampton City 01/10/08 30/09/09 01/01/09 31/12/09 01/04/09 31/03/10 01/07/09 30/06/10 No. of Patients with Diabetes Identified by Practices in the PCT 9477.00 9916.00 10101.00 10335.00 Number of People with Diabetes Offered Screening for DR 7690.00 8331.00 9217.00 9417.00 No. of People with Diabetes receiving Screening for Early Detection of DR 6566.00 6516.00 6452.00 6511.00 Description During a six month period in 2009 (April to September), 77 people were referred on as ‘urgent’ referrals, 139 as ‘soon’ referrals, and 487 as ‘routine’ referrals. Uptake of screening is challenging to assess for an annual screening programme. Proxy measures, such as did not attend (DNA) rates can be used to measure uptake. From this audit, this can be assessed from four perspectives: • Those recorded as ‘DNA with no subsequent attendance in the following year’ by the screening programme • Those recorded as offered screening who were actually screened • Exclusions from the screening programme • Those recorded in GP records as not having attended retinopathy screening. Each of these have limitations, such as uncertainty about the completeness of recording of screening at practice level, and the problems encountered with accurately interrogating the screening programme database(such as changing patterns with time). However, examining the characteristics of those not attending using these groups gives interesting insights into the diabetic population, which may be useful in reshaping aspects of the service. DNA Did not attend (DNA) refers to patients who had an appointment for retinal screening who did not attend that appointment or arrange another within the time frame under consideration. There were 925 DNAs to the Southampton, South West Hampshire, and Isle of Wight screening programme in a one year period (April 2009 to March 2010). (496 male, 429 female). This represents a DNA rate of 2.34% overall. The chart below shows, for a 6 month period, the age/sex distribution of those who did not attend for screening. This shows that a greater number of men, particularly in the middle age groups, tended to DNA. Information Centre. Crown Copyright Ordnance Survey. An EDINA/JISC supplied service. This research was undertaken at the University of Southampton with funding as part of an ESRC standard research grant award (RES-062-23-1811). Dr Simon Fraser & Dr Laura Edwards July 2010 33 Figure S15. Age and gender distribution of people who did not attend screening in the Southampton, South West Hampshire, and Isle of Wight retinal screening programme in a six month period. Age / sex characteristics of people who DNAd the SHIOW retinopathy screening programme April to September 2009 with no subsequent attendance recorded 60 50 40 Male 30 Female 20 10 0 12 to 19 20 to 29 30 to 39 40 to 49 50 to 59 60 to 69 70 to 79 80 to 89 90 to 99 >100 Age group If these figures are expressed as the proportion of people in each age group who did not attend, then the younger age groups are more noticeably represented. (It should be noted that there are only very small numbers of people in the >100 age group as might be expected). This has implications for the programme in terms of targeting screening efforts to accommodate the needs of these age groups. Figure S16. Distribution of age and gender among those who DNA as a proportion of the number of people in each age group. Proportion of age and gender groups that DNAd the SHIOW DRS programme in a 6 month period 12.00% 10.00% 8.00% Proportion DNA 6.00% 4.00% 2.00% 0.00% 12 to 19 20 to 29 30 to 39 40 to 49 50 to 59 Male 60 to 69 70 to 79 80 to 89 90 to 99 >100 Female Deprivation is another variable with the potential to affect uptake of the screening service (and therefore affect equity). It is therefore valuable to consider those who DNA in terms of the deprivation decile of their home address. The chart below gives this distribution for a one year period for the number of people. Dr Simon Fraser & Dr Laura Edwards July 2010 34 Dr Simon Fraser & Dr Laura Edwards July 2010 35 Figure S17. Gender and deprivation distribution of people who DNA the Southampton, South West Hampshire, and Isle of Wight retinal screening programme in a one year period As for age, if this is represented in terms of the proportion of people in each IMD decile who did not attend, the more deprived groups are more noticeably represented. Figure S18. Gender and deprivation distribution of people who DNA the Southampton, South West Hampshire, and Isle of Wight retinal screening programme in a one year period as a proportion of people in each deprivation decile Proportion of people registered with the SHIOW DRS Programme who DNA'd in a one year period 6.00% 5.00% 4.00% Proportion who 3.00% DNA'd 2.00% 1.00% 0.00% 1 2 3 4 5 6 7 8 9 10 Index of Multiple Deprivation Decile (1 = most deprived, 2 = least deprived) Proportion of men Proportion of women Proportion of total Broadly speaking, a higher proportion of men who reside in the lower deciles of deprivation did not attend, whereas a higher proportion of women from less deprived areas DNA. If age and deprivation are combined, we can show that younger people who DNA tend to come from more deprived areas: Dr Simon Fraser & Dr Laura Edwards July 2010 36 Figure S19. Age and deprivation distribution of people who DNA the Southampton, South West Hampshire, and Isle of Wight retinal screening programme in a one-year period as a proportion of people in each deprivation decile. Proportion of people who DNA the SHIOW DRS Programme in each age group and quintile of deprivation (1 = most deprived, 5 = least deprived) 12.00% 10.00% 8.00% Proportion 6.00% who DNA 4.00% 2.00% 0.00% 0 to 9 10 to 19 20 to 29 30 to 39 40 to 49 50 to 59 60 to 69 70 to 79 80 to 89 90 to 99 100+ Age group 1 2 3 4 5 Total Offered and screened An assessment was made of the uptake of screening by the location of the screening vans. The chart below shows an example of this from the Isle of Wight. It shows the proportion of people offered screening in a six month period who were actually screened (by GP practice). Those practices where the screening vans did not visit are shown in red. This shows that, overall, the uptake of screening is good. It also shows that being registered with a practice that is not a screening location does not predict the proportion actually screened, suggesting that good mechanisms are in place to offer screening at neighbouring practices. Figure S20. Proportion of people, registered with Isle of Wight GP surgeries, offered screening who were actually screened Percentage of Isle of Wight people with diabetes (by GP practice) offered retinopathy screening (April - September 2009) who were actually screened . Practices not visited by the van shown in red. Ca ris b H ed in a M Ea st Co w es ea lt h ca re He al th C en tre -N EW PO ro ok RT e He St al t h He Ce le nt ns re M ed ic al G Ce ar nt fie re ld R oa d Su rg Es Be er pl ec y an h ad G e ro S ve ur Su ge ry rg er y -B R AD Py IN le G St re et Sa Su nd rg er ow y n He al Ve th C nt en no tre rM ed ic a lC To en w er tr e Ho us e Su Ar rg gy er ll H y ou se Su rg Br er ig y hs to n e Br Su oo rg ks er id y e He al t h Co Ce we nt s re M ed ica Sh lC an en kl in tr e M ed ica lC G en ro tre ve Ho us e Su rg er y 100.00% 90.00% 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Exclusions The most recent figures from the Southampton, South West Hampshire, and Isle of Wight screening programme for Southampton City PCT patients (from quarterly vital signs data 30th June 2010) shows the following: Dr Simon Fraser & Dr Laura Edwards July 2010 37 Table S3. Numbers of people who are classified as exclusions from the screening programme in Southampton City Description 01/10/08 30/09/09 01/01/09 31/12/09 01/04/09 31/03/10 01/07/09 30/06/10 Number of people with diabetes offered screening 7690.00 8331.00 9217.00 9417.00 Number of people with diabetes classified as excluded from screening 587.00 604.00 879.00 1364.00 Proportion of people identified as diabetic who are classified as excluded from screening 6.19% 6.09% 8.70% 13.20% Table S4. Reasons for exclusions from the Southampton, South West Hampshire, and Isle of Wight retinal screening programme Reason Southampton Eye Unit - DR referral Deceased Assess future suitability for Mobile screening Under ophthalmology care (Non DESS referral) Moved out of area Patient has opted out of screening No longer considered diabetic Physically Incapable No current contact details Terminally Ill Mentally Incapable Blind - screening contraindicated Winchester Eye Unit - DR referral Under 12 Southampton City PCT Total Number 877 637 155 135 126 87 86 81 52 52 9 8 3 2 2310 Proportion of total excluded 37.97% 27.58% 6.71% 5.84% 5.45% 3.77% 3.72% 3.51% 2.25% 2.25% 0.39% 0.35% 0.13% 0.09% 100.00% GP records Analysis of data by practice shows possible associations between practice diabetes prevalence and control of diabetes and uptake of screening, which suggest that a higher prevalence of diabetes in the practice, and better control of diabetes lead to a better uptake of screening. However, there are many potential confounding factors (alternative explanations for this finding such as age of practice population) so it is incorrect to make cause and effect assumptions. Dr Simon Fraser & Dr Laura Edwards July 2010 38 Figure S21. Scatterplot of Southampton and Isle of Wight GP practices’ registered prevalence of diabetes and proportion screened for retinopathy in last year Figure S22. Scatterplot of Southampton and Isle of Wight GP practices’ proportion of diabetics with last Hba1c measurement less than 8mmol/l and proportion screened for retinopathy in last year In order to better understand the population of people not being screened, analysis of GP records focused on those people not recorded as having had retinal screening for two periods of time – in the last year and in the last 3 years (since April 2009 and since April 2007 respectively). Overall, for practices referring to the Southampton, South West Hampshire, and Isle of Wight screening programme about 8,800 people with diabetes do not have a record of retinal screening in the last year, and 3,200 have no record of screening in the last three years. Dr Simon Fraser & Dr Laura Edwards July 2010 39 Unfortunately, the current lack of Super Output Area and deprivation measure in the Hampshire Health record means that the picture of deprivation among people with diabetes registered with GPs in this programme is incomplete as shown below. Figure S23. Distribution of Index of Multiple deprivation deciles in GP surgeries referring to the Southampton, South West Hampshire, and Isle of Wight screening programme. However, the chart below shows the distributions for Southampton City and the Isle of Wight, where the information is complete, because all practices submitted data directly for this audit. Figure S24. Distribution of Index of Multiple deprivation deciles for people with diabetes in GP surgeries in Southampton. Dr Simon Fraser & Dr Laura Edwards July 2010 40 This shows that the highest number of people with diabetes in Southampton live in areas within Lower Super Output Areas in national deprivation deciles 2 to 5. Figure S25. Distribution of Index of Multiple deprivation deciles for people with diabetes in GP surgeries in the Isle of Wight. This shows that the highest number of people with diabetes in the Isle of Wight live in areas within Lower Super Output Areas in national deprivation deciles 3 to 5. The following chart shows the distribution of degree of deprivation of place of residence of people with no record of screening in the last year in their GP record (in those for whom the postcode was known). This also suggests a higher proportion of those in lower deprivation deciles are not being screened. It must be remembered, however, that the deprivation status was not known for many patients in the programme as a whole. Figure S26. Distribution of Index of Multiple deprivation deciles for people with diabetes in GP surgeries referring to the Southampton, South West Hampshire, and Isle of Wight retinal screening programme where the Lower Super Output Area of residence was known. Number Gender and IMD decile distribution for people registered with GPs referring to the SHIOW DRS programe whose IMD status is known and who have no record of screening since April 2009 500 450 400 350 300 250 200 150 100 50 0 1 2 3 4 5 6 7 8 9 10 IMD decile (1 = most deprived, 10 = least deprived) Male Dr Simon Fraser & Dr Laura Edwards July 2010 Female 41 The following charts show the age, gender, deprivation, and type of diabetes distribution of those with no record of screening in the last three years. These show that the majority of people with no record of screening in the last three years are men, aged 50 to 70, but, for people with Type 1 diabetes, a younger age group has no record of screening. Figure S27. Age and gender of people from GP practices referring to the Southampton, South West Hampshire, and Isle of Wight retinal screening programme with no record of screening Age and gender distribution of people with diabetes registered with GP practices referring to the SHIOW DRS programme who have no record of screening in the last 3 years 450 400 350 Number 300 250 200 150 100 50 0 12 to 19 20 to 29 30 to 39 40 to 49 Male 50 to 59 60 to 69 70 to 79 80 to 89 90 to 99 100+ Female Figure S28. Age and gender of people with Type 1 diabetes from GP practices referring to the Southampton, South West Hampshire, and Isle of Wight retinal screening programme with no record of screening Dr Simon Fraser & Dr Laura Edwards July 2010 42 Figure S29. Age and gender of people with Type 2 diabetes from GP practices referring to the Southampton, South West Hampshire, and Isle of Wight retinal screening programme with no record of screening If this is represented as a proportion of people with diabetes in the practices referring to the Southampton, South West Hampshire, and Isle of Wight screening programme, as shown in the chart below, it is striking that young adults and the very elderly are more noticeably represented. This distribution is similar to that for the DNAs to the programme represented above. If the proportion of those with no record of screening in GP records is truly representative of those not screened, it is of concern that up to 20% of those between 20 and 40 have not been screened. This is particularly noticeable in men. Figure S30. Proportion of people in each age and gender group from GP practices referring to the Southampton, South West Hampshire, and Isle of Wight retinal screening programme with no record of screening Dr Simon Fraser & Dr Laura Edwards July 2010 43 Figure S31. Proportion of people with specified type of diabetes from GP practices referring to the Southampton, South West Hampshire, and Isle of Wight retinal screening programme with no record of screening (Under 12s are excluded, and ‘Diabetes mellitus’ refers to those in whom a general diabetes code was used rather than Type 1 or Type 2. ‘All types’ refers to the overall proportion when all are considered together) Proportion with no record of screening Proportion of people with each type of diabetes in practices referring to the SHIOW DRS programme with no record of screening in the last 3 years 14.00% 12.00% 10.00% 8.00% 6.00% 4.00% 2.00% 0.00% Diabetes mellitus Type 1 diabetes mellitus Male Type 2 diabetes mellitus Female All types Total These charts show that more Type 2 diabetics, and those Type 1 diabetics in younger age groups have no record of screening in the last 3 years, but that the proportions in each diabetes type are similar. Dr Simon Fraser & Dr Laura Edwards July 2010 44 Outcomes Measuring success and equity in terms of outcomes of screening are difficult for a number of reasons: • The need for annual screening • A changing population (people moving into and away from the area, new cases, deaths) • The low incidence of blindness and visual impairment due to diabetes • The need for accurate recording of outcomes • The limitations in ability to query screening and hospital IT systems for outcome data For these reasons, proxy outcomes are often used to monitor the screening programme. Examples are the numbers of referrals from the programme for ophthalmology opinion. Some information for the Southampton, South West Hampshire and Isle of Wight programme is given here. However, for IT reasons, accessing this information at patient level to assess some of the dimensions of equity is problematic. Table S5. Referral numbers from the Southampton, South West Hampshire, and Isle of Wight retinal screening programme Referral classification Urgent referrals 1/4/200931/3/2010 Soon referrals 1/4/200931/3/2010 Routine Referral 1/4/200931/3/2010 (Unassessable) Routine referral 1/4/200931/3/2010 (Maculopathy) PCT Hampshire PCT Isle of Wight PCT Southampton City PCT Hampshire PCT Isle of Wight PCT Southampton City PCT Hampshire PCT Isle of Wight PCT Southampton City PCT Hampshire PCT Isle of Wight PCT Southampton City PCT Number 76 22 33 149 41 79 14 10 11 439 150 208 Blindness As part of the validation process of the numbers of patients for the Southampton retinopathy screening programme, an audit was recently undertaken of practice data examining registration of blindness and other degrees of visual impairment for practices in Southampton City PCT. Of a GP-registered population of approximately 264,000 in Southampton city practices, there were 875 people (0.33% of total population) recorded as having some form of visual impairment in their GP records. Of these 323 (37%) were registered blind, 371 (42%) were registered partially sighted, and 181 (21%) had non-specific ‘visual loss’ recorded. Of this 875 people with visual impairment, 141 (16%) have a record of having diabetes. 197 of the 875 (22.5%) have a record of macular degeneration. However, as shown in the chart below, there is a wide variation in the recorded prevalence of visual impairment in different practices (range 0% to 1.2%). This may reflect differences in recording practices, differences in the demography of practice populations, or a true difference in the prevalence of visual impairment in different parts of the city. It is not possible to determine which of these possibilities is the case from currently available data. An even greater range is seen in the proportion of those recorded as having visual impairment that have a diagnosis of diabetes (0 – 67%). This wide variation means that firm conclusions about causes of blindness in the city cannot be determined. Caution should therefore be exercised in drawing conclusions from practice-level visual impairment data about the success or otherwise of the retinopathy screening programme in preventing blindness from causes related to diabetes. Dr Simon Fraser & Dr Laura Edwards July 2010 45 Figure S32. Prevalence of all forms of visual impairment (including partial sight and blindness) as recorded in GP records in Southampton An alternative approach was therefore adopted in conducting this equity audit. In order to compare people having screening with those who appear not to be having screening, the data obtained from GP databases was analysed for two distinct groups of people: • Those with a record in their electronic GP notes of having had retinal screening in the last year (since April 2009) • Those with no record of retinal screening in their electronic GP notes for the last three years (since April 2007). In doing this, it is recognised that there may be many reasons why there is no GP record of screening, including those excluded from screening because of blindness or other reasons, lack of recording by GP practices, or true lack of registration with the programme or non-attendance by the patient. However, this approach was considered reasonable on the basis that recording of retinopathy screening is required as one of the targets in the GP Quality and Outcomes Framework, and recording is therefore likely to be optimized by practices. It was also considered reasonable as those identified are likely to include those people who are either not registered with the screening programme at all, or are not attending. As there is a possible correlation between attendance at retinal screening and other measures of good diabetes management, this group are therefore also potentially at greater risk of other diabetic complications. Identifying their characteristics may therefore be helpful to everyone involved in their diabetes care. The results of this comparison for the Southampton, South West Hampshire and Isle of Wight programme are shown in the table below. Dr Simon Fraser & Dr Laura Edwards July 2010 46 Table S6. Comparison of characteristics between people with a record of retinal screening in the last year and people with no record of screening in 3 years in their GP records. Number SHIOW screened within last year SHIOW 3-year no screening recorded 11876 3287 Number % Number % 6577 5299 55.38% 44.62% 1851 1436 56.30% 43.70% 5307 2896 3673 44.69% 24.39% 30.93% 239 433 2394 7.28% 13.16% 72.84% 946 7.97% 337 10.25% 2699 1236 7941 22.73% 10.41% 66.87% 1011 425 1909 30.76% 12.94% 58.08% 2204 110 9562 18.56% 0.93% 80.52% 860 57 2339 26.16% 1.72% 71.15% 868 7.31% 238 7.24% Background Proliferative or pre-proliferative Maculopathy 47 8 12 0.40% 0.07% 0.10% 5 2 2 0.15% 0.06% 0.06% Laser treatment recorded 122 1.03% 9 0.27% 58 119 5572 0.49% 1.00% 46.92% 35 31 1319 1.06% 0.94% 40.13% Gender Male Female Diabetes type General 'diabetes' code used Type 1 Type 2 Deprivation Percentage in lowest IMD quintile Ethnicity White British Other No record Language of choice English Other No record Retinal screening Recorded as seeing optician / optometrist Retinopathy recorded Visual impairment Blind Partial sight Hypertension This comparison suggests that a higher proportion of people in the ‘3-year non-attendance’ population were male and lived in more deprived areas compared to the ‘screened in the last year’ population. There may be differences in the type of diabetes between the groups, but given the high proportion of those in which a general code for diabetes was used, it is not possible to comment on this. Similarly, for ethnicity and language groups, there may be important differences, but they are obscured by lack of completeness of recording. A similar proportion in each group appears to opt for optometrist attendance. A lower proportion in the unscreened group had a record of retinopathy and laser treatment recorded, but a higher proportion of blindness. The high prevalence of hypertension in both groups is a particular concern for the unscreened group as high blood pressure is associated with an increased risk of developing retinopathy. Dr Simon Fraser & Dr Laura Edwards July 2010 47 Portsmouth and South East Hampshire Diabetic Retinopathy Screening Programme Dr Simon Fraser & Dr Laura Edwards July 2010 48 Description of the population There are approximately 24,700 people registered with the Portsmouth and South East Hampshire retinopathy screening programme (the number varies because new people are referred to the programme, some people are seen for eye problems elsewhere and are temporarily or permanently lost to screening follow up within the programme, and some move away from the area or die). Of these, approximately 21, 800 are categorized as having ‘current’ status (i.e. the general status used for new and existing patients who should continue to be screened). Approximately 1,300 are categorized as ‘care elsewhere’ status (i.e. a patient is being screened during regular visits to an Eye Department clinic). Age, gender, type of diabetes, measures of deprivation The age and gender distribution of those registered with the programme are shown in the three charts below. The first and third charts use data from the screening programme, and the second from GP surgeries referring patients to the programme. (It should be remembered that the numbers are less in the GP data because of the lack of completeness of data from the Hampshire Health record). They show that there are more men than women registered with the programme, that largest proportion of men are between 60 and 80,and the largest proportion of women are between 70 and 85. Figure P1. Age and gender distribution using data from the Portsmouth and South East Hampshire screening programme Age and gender distribution of people registered with the Portsmouth DRS service 2500 2000 1500 Number 1000 500 0 0 to 5 to 10 to 15 to 20 to 25 to 30 to 35 to 40 to 45 to 50 to 55 to 60 to 65 to 70 to 75 to 80 to 85 to 90 to 95 to 100 105+ 4 9 14 19 24 29 34 39 44 49 54 59 64 69 74 79 84 89 94 99 to 104 Male Female Not recorded Figure P2. Age and gender distribution using data from GP practices referring to the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 49 This shows that, despite the lack of completeness of GP data available, the population distributions are very similar. Figure P3. Population pyramid showing proportions of each age group and gender registered with the Portsmouth and South East Hampshire screening programme Population pyramid pf people registered with the Portsmouth and SE Hants Diabetic Retinopathy Screening Programme 105+ 100 to 104 95 to 99 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 age group 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 10 to 14 5 to 9 0 to 4 10.00% 8.00% 6.00% 4.00% 2.00% 0.00% 2.00% 4.00% 6.00% 8.00% Percentage of people Male Female Of the 24,700 people registered with the Portsmouth and SE Hants programme, approximately 13,000 (52%) have the type of diabetes recorded in the retinopathy screening database. The age and gender distribution of those for whom type of diabetes is recorded is shown in the first two charts below. More complete data on type of diabetes comes from the GP records, which is shown in the third chart below. Dr Simon Fraser & Dr Laura Edwards July 2010 50 Figures P4 & P5. Distribution of type of diabetes from Portsmouth and South East Hampshire screening programme data Age and gender distribution of people known to have Type 1 diabetes registered with the Portsmouth DRS Programme 250 200 150 100 50 95 to 99 100 to 104 105+ 105+ 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 60 to 64 95 to 99 Male 100 to 104 Female 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 5 to 9 10 to 14 0 to 4 0 Total Age and gender distribution of those people known to have Type 2 diabetes in the Portsmouth DRS Programme 2000 1800 1600 1400 1200 1000 800 600 400 Female Male Unknown 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 10 to 14 5 to 9 0 to 4 200 0 Total Figure P6. Distribution of type of diabetes from GP data of practices referring to the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 51 It is noticeable from these charts that the majority of the burden of disease due to diabetes in the population is from Type 2 diabetes. The population registered with the programme comes from a wide variety of socio-demographic backgrounds. One way of expressing this is to look at rankings of the Index of Multiple Deprivation (IMD) - a deprivation index at a small area level known as Lower Super Output Areas (LSOAs). LSOAs have between 1000 and 3000 people living in them with an average population of 1500 people. In most cases, these are smaller than wards, thus allowing the identification of small pockets of deprivation. The IMD combines a number of factors covering a range of health, economic, social and housing issues into a single deprivation score for each small area in England. There are 32,482 LSOAs in England. The LSOA ranked 1 by the IMD 2007 is the most deprived and that ranked 32,482 is the least deprived. A common way to summarise IMD ranking is to divide the ranks into quintiles and deciles, in other words to describe ‘the most deprived 20% or 10%’ and ‘the least deprived 20% or 10%’. Portsmouth City PCT rank of average Index of Multiple deprivation is 71stout of 152 PCTs (compared to Southampton 70th and Hampshire 147th, where 1 is most deprived and 152 least deprived). Portsmouth City has areas significant deprivation, particularly in Charles Dickens ward, which has one Super Output Area which is among the most deprived 10% of SOAs in the South East, and in which 47% of the population are classified as ‘income deprived’ 15. The chart below shows the number and gender of people registered with the Portsmouth and South East Hampshire screening programme who live in each of the 10 national deciles of multiple deprivation (where 1 is most deprived and 10 is least deprived). Figure P7. Index of Multiple Deprivation distribution for those registered with the Portsmouth and South East Hampshire screening programme Numbers of people registered with the Portsmouth DRS Programme by gender and IMD deciles 2500 2000 1500 1000 500 0 1 2 3 4 5 6 7 8 9 10 IMD decile (1 = most deprived, 10 = least deprived) Male Female This shows that a significant proportion of people registered with this screening programme live in more deprived areas. 21% of those registered with the programme live in areas within IMD deciles 1, 2, and 3, and 36% live in areas within IMD deciles 8, 9, and 10. Ethnicity Recording of ethnicity data is incomplete in many NHS contexts, and ethnicity definitions vary between organisations and between different years of the national census. Despite these limitations, there is an impression that ethnicity information is being more routinely collected, and ethnicity and language issues may be important in terms of equity. The GP data requested therefore included a search for ethnicity status. For practices referring to the Portsmouth and South East Hampshire programme, a summary of this information for the main groups for which data was recorded is given below: 15. Portsmouth City Council information from www.Portsmouth.gov.uk. Accessed July 2010 Dr Simon Fraser & Dr Laura Edwards July 2010 52 Table P1. Ethnicity recording in Portsmouth and South East Hampshire GP practices Ethic group Not recorded White British White other Indian Other Asian Black African Black Caribbean Number 10969 8444 965 85 182 41 19 Proportion of total 52.57% 40.47% 4.62% 0.41% 0.87% 0.20% 0.09% It can be seen from this that, for the majority of people registered with the screening programme, ethnicity information is not recorded. This makes it difficult to draw conclusions about equity between ethnic groups in the analysis of the data in this audit. Dr Simon Fraser & Dr Laura Edwards July 2010 53 Provision As stated above, screening in the Portsmouth and South East Hampshire programme is delivered via static cameras in five locations: • St Mary’s NHS Treatment Centre, Portsmouth • Gosport War Memorial Hospital • Emsworth Victoria Cottage Hospital • Sylvan Clinic, Coldeast Hospital • Petersfield Community Hospital The maps below show the screening locations and the number of patients registered with the programme in each area. Dark red areas are those with higher numbers of patients registered with the programme. It can be seen that there are two distinct areas with a higher density of patients which are some way from the location of the static cameras: Horndean and Cowplain, and Hayling Island. There are also areas of Portsmouth city with higher numbers of diabetics, such as Somerstown and Portsea. In addition to this, areas of Havant and Waterlooville appear to have high numbers of people with diabetes registered with the programme. Figure P8. Map of Screening locations and numbers of patients registered with the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 54 Figure P9. Map of screening locations and numbers of patients in Portsmouth City registered with the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 55 Figure P10. Map of Screening locations and numbers of patients in Havant and Hayling registered with the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 56 Figure P11. Map of screening locations and numbers of patients in Fareham and Gosport registered with the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 57 Figure P12. Map of Screening locations and numbers of patients in Petersfield and Bordon registered with the Portsmouth and South East Hampshire screening programme Access Access to the screening service is determined by several factors including the geographical location of services, the timing of service provision, and the mobility of the population served. Due to software limitations, it is not possible to extract information on the numbers and proportions of people screened at each of the screening locations. All screening sites operate in core hours except the St Mary’s treatment centre which does have some Saturdays and a late session (till 8pm on Wednesdays). In the past, the programme offered some appointments on Saturdays at Petersfield but the numbers using this opportunity were small. The St Mary’s treatment centre opened in April 2007, is fully booked at all times and sees 36 patients per day. The Bio Microscopy Clinic runs on Mondays and sees 27 patients per day, led by a consultant ophthalmologist or a practicing fully qualified optometrist. Extra clinics are held on Thursdays when capacity is required. The Gosport War Memorial Hospital clinic opened in June 2007. It is operational four days per week; Monday, Wednesday, Thursday, Friday 8.30 – 4.30, and sees 36 patients per day. The site opening hours do not allow for Saturday clinics or late clinics. The Emsworth Victoria Cottage Hospital opened in July 2007. It is Operational five days per week, reduced to four days when there is a Petersfield clinic on a Tuesday. 8.50 – 4.30 The later starting time is due to the opening hours of the unit. 34 patients are seen per day. The site opening hours do not allow for Saturday clinics or late clinics. The Sylvan Clinic opened in May 2009 and is operational one day per week – Tuesday 8.40 – 4.30 – and books 36 patients per day Later starting time due to opening hours of the unit. The site opening hours do not allow for Saturday clinics or late clinics. Petersfield Hospital site opened in July 2009 and has been operational two days per month. It has experienced poor uptake in the past. Grading screen for ophthalmologist to complete EQA and review images of bio microscopy patients. One of the challenges for retinopathy screening in Portsmouth is the need for patients to travel to the location of the static cameras. For Portsmouth city this means getting to St Mary’s NHS treatment centre. Some patients in the survey component of this audit commented that the location of the service and transport to it were challenging. It was perceived that this might be a particular problem for certain groups of people. This is explored further below under ‘uptake’. In order to assess the impact of location on access to the Portsmouth and South East Hampshire programme, we mapped the area covered by the screening programme and superimposed rates of nonattendance to give an impression of ‘density of DNA’. The maps below show this for DNAs in a one year Dr Simon Fraser & Dr Laura Edwards July 2010 58 period by lower super output area. The dark red areas are those with the highest rate of DNA in this period. It is important for the programme to consider the reasons for higher numbers of DNAs in certain areas in terms of camera locations, timing of service provision, and the characteristics of the population. Figure P13. Map of rates of DNA among people in Portsmouth City registered with the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 59 Figure P14. Map of rates of DNA among people in Havant and Hayling registered with the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 60 Figure P15. Map of rates of DNA among people in Fareham and Gosport registered with the Portsmouth and South East Hampshire screening programme Figure P16. Map of rates of DNA among people in Petersfield and Bordon registered with the Portsmouth and South East Hampshire screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 61 Uptake In 2007 – 2008, the Portsmouth and South East Hampshire screening programme screened 12154 people. In 2009/10, the programme screened over 16,000 (exact figures not yet confirmed). Uptake of screening is challenging to assess for an annual screening programme. Proxy measures, such as did not attend (DNA) rates can be used to measure uptake. From this audit, this can be assessed from three perspectives: • Those recorded as ‘DNA with no subsequent attendance in the following year’ by the screening programme • Those recorded in GP records as not having attended retinopathy screening. • Those people classified in the screening programme as ‘declined’ or ‘permanent opt out’ of the service. Each of these has limitations, such as uncertainty about the completeness of recording of screening at practice level, and problems that may be encountered when interrogating the screening programme database (such as changing patterns with time). However, examining the characteristics of those not attending using these groups gives interesting insights into the diabetic population, which may be useful in reshaping aspects of the service. The chart below shows the age and gender distribution of people who did not attend screening in a one year period (1st April 2009 to 31st March 2010). This shows that a greater number of men did not attend, particularly in younger age groups, and that the DNAs appear to be in younger age groups generally than the age distribution of the screening programme as a whole. Figure P17. Age and gender distribution of people who did not attend screening in the Portsmouth and South East Hampshire screening programme in a one-year period. Age and gender distribution of people who DNA the Portsmouth/SE Hants DRs Programme in 1 year 180 160 140 120 Number 100 80 60 40 20 0 0 to 4 5 to 10 to 15 to 20 to 25 to 30 to 35 to 40 to 45 to 50 to 55 to 60 to 65 to 70 to 75 to 80 to 85 to 90 to 95 to 100 105+ 9 14 19 24 29 34 39 44 49 54 59 64 69 74 79 84 89 94 99 to 104 Male Female Not recorded If these figures are expressed as the proportion of people in each age group who did not attend, then the younger age groups are more noticeably represented. This has implications for the programme in terms of targeting screening efforts to accommodate the needs of these age groups. Dr Simon Fraser & Dr Laura Edwards July 2010 62 Figure P18. Distribution of age and gender among those who DNA as a proportion of the number of people in each age group in the Portsmouth and South East Hampshire screening programme Proportion of people who DNA the Portsmouth / SE Hants DRS Programme by age group and gender 25.00% 20.00% 15.00% Proportion who DNA 10.00% 5.00% 0.00% 0 to 4 5 to 10 to 15 to 20 to 25 to 30 to 35 to 40 to 45 to 50 to 55 to 60 to 65 to 70 to 75 to 80 to 85 to 90 to 95 to 100 105+ 9 14 19 24 29 34 39 44 49 54 59 64 69 74 79 84 89 94 99 to 104 Male Female The total proportion of males who did not attend is 8.47%; the proportion of women is 8.45%. The difference between these proportions was not statistically significant (at the 5% level). Deprivation is another variable with the potential to affect uptake of the screening service (and therefore affect equity). It is therefore valuable to consider those who DNA in terms of the deprivation decile of their home address. The chart below gives this distribution for a one-year period for the number of people. Figure P19. Gender and deprivation distribution of people who DNA the Portsmouth and South East Hampshire retinal screening programme in a one year period Number of people who DNA the Portsmouth DRS Programme in a 1 year period by IMD deciles 300 250 200 Number of people 150 100 50 0 1 2 3 4 5 6 7 8 9 10 IM D decile (1 = most deprived, 10 = least deprived) Men Women Total As for age, if this is represented in terms of the proportion of people in each IMD decile who did not attend, the more deprived groups are much more noticeably represented. Dr Simon Fraser & Dr Laura Edwards July 2010 63 Figure P20. Gender and deprivation distribution of people who DNA the Portsmouth and South East Hampshire retinal screening programme in a one year period as a proportion of people in each deprivation decile Proportion of people in the Portsmouth DRS Programme who DNA in a 1 year period by deprivation deciles 14.00% 12.00% 10.00% Proportion who 8.00% DNA in 1 year 6.00% 4.00% 2.00% 0.00% 1 2 3 4 5 6 7 8 9 10 IMD decile (1 = most deprived, 10 = least deprived) Proportion of men Proportion of women Proportion of total The odds ratio for not attending if in the lower two deciles compared to the highest two deciles is 1.90 (p<0.0001). This implies that the odds of not attending in those who live in a more deprived area is nearly twice the odds for those living in the least deprived area. There is also a difference in the proportion of male and female DNAs, with more women from deprived areas tending to DNA compared to men, while the reverse is true of the less deprived areas. As stated above, the proportion of those people where the type of diabetes is recorded is 52%. For those in whom this is known, in the year for which these figures were collected, the proportion of people with Type 1 diabetes who did not attend was 12.45%. For type 2 diabetics, this figure was 8.93%. The odds ratio for DNA if Type 1 compared to Type 2 is 1.45 (p<0.0001). In other words, in the sample of those who did not attend, for whom type of diabetes is recorded, the odds of Type 1 diabetics not attending was 1.45 times that of Type 2 diabetics, and the difference in proportion attending was statistically significant. However, it must be remembered that this only represents a proportion of all those who did not attend, and the true value might be different if the data on type of diabetes were complete. It is also worth considering those people who are not receiving screening, because, for a variety of reasons, they decline or opt out of the programme. From the screening programme records, it is possible to look at the age, gender, and type of diabetes of people in these groups. The numbers of people are as follows: Total ‘declined’ = 437 people Total ‘permanent opt out = 225 people The charts below show the age and gender distributions of those classified as ‘declined’ and ‘permanent opt out’ in the programme in terms of absolute numbers and as proportions of people in each age group. It can be seen that for both of these categories, older people form a higher proportion of those declining or opting out of screening. This may not be very surprising, particularly for the very elderly. However, it may be important to consider the access of elderly people to the screening programme as some may decline on the basis of not being able to get to the cameras. In addition to this, it may be very valuable to explore in more detail the small number of younger people who decline or opt out, as there may be important implications for them in the long term for not being screened. Dr Simon Fraser & Dr Laura Edwards July 2010 64 Figure P21. Age and gender distribution of people classified as ‘declined’ in the Portsmouth and South East Hampshire screening programme Age and gender distribution of people classified as 'declined' in the PSEH DRS programme 40 Number declined 35 30 25 20 15 10 5 Male 105+ 100 to 104 95 to 99 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 10 to 14 5 to 9 0 to 4 0 Female This suggests that people who decline screening tend to be in the older age groups. Figure P22. Age and gender distribution of people classified as ‘declined’ in the Portsmouth and South East Hampshire screening programme as a proportion of people in the programme in each age group Proportion of people 'declined' in each age group of the PSEH DRS programme 14.00% Proportion declined 12.00% 10.00% 8.00% 6.00% 4.00% 2.00% Male 105+ 100 to 104 95 to 99 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 10 to 14 5 to 9 0 to 4 0.00% Female This suggests that a greater proportion of people in older age groups decline screening. Dr Simon Fraser & Dr Laura Edwards July 2010 65 Figure P23. Age and gender distribution of people classified as ‘permanent opt out’ in the Portsmouth and South East Hampshire screening programme Age and gender distribution of 'permanent opt outs' from PSEH DRS programme Number of 'opt out' 25 20 15 10 5 Male 105+ 100 to 104 95 to 99 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 5 to 9 10 to 14 0 to 4 0 Female As for those classified as ‘declined’, this suggests that people who permanently opt out of screening tend to be in the older age groups. Figure P24. Age and gender distribution of people classified as ‘permanent opt out’ in the Portsmouth and South East Hampshire screening programme as a proportion of people in the programme in each age group Proportion of people in each age group classified as 'permanent opt out' in PSEH DRS programme Proportion 'opt out' 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% Male 105+ 100 to 104 95 to 99 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 5 to 9 10 to 14 0 to 4 0.00% Female This suggests that a greater proportion of people in older age groups permanently opt out of screening. Comparing gender differences in the screening programme, the odds ratio of being classified as ‘declined’ or ‘permanent opt out’ is 1.25 female: male (χ2 7.79, p<0.05) In those for whom type of diabetes is recorded, the following charts show the proportion in each age group who are classified as ‘declined’ or ‘permanent opt out’. These show a higher proportion of middle aged people with type 1 diabetes and an older population of people with type 2 diabetes who fall into these categories. Dr Simon Fraser & Dr Laura Edwards July 2010 66 Figure P25. Age and gender distribution of people with Type 1 diabetes classified as ‘declined’ or ‘permanent opt out’ in the Portsmouth and South East Hampshire screening programme as a proportion of people in the programme in each age group Proportion of people by age known to have Type 1 diabetes in the Portsmouth DRS programme classified as 'declined' or 'permanent opt out' 8.00% 7.00% 6.00% 5.00% 4.00% 3.00% 2.00% 1.00% 95 94 10 to 9 9 0 to 10 4 10 5+ 89 to 84 90 85 80 75 to 79 to 74 to 69 65 70 to to 60 Male to 64 59 54 55 to to 50 45 to 49 44 39 40 to 35 30 to 34 29 to to 19 to to 25 10 15 20 9 14 to 4 to to 5 0 24 0.00% Female Figure P26. Age and gender distribution of people with Type 2 diabetes classified as ‘declined’ or ‘permanent opt out’ in the Portsmouth and South East Hampshire screening programme as a proportion of people in the programme in each age group Proportion of people by age known to have Type 2 diabetes in the Portsmouth DRS programme classified as 'declined' or 'permanent opt out' 9.00% 8.00% 7.00% 6.00% 5.00% 4.00% 3.00% 2.00% 1.00% Male 95 10 to 9 9 0 to 10 4 10 5+ 94 89 to 90 84 to 85 79 to 80 74 to 75 69 to 70 64 to 65 60 to 59 54 to 55 to 50 45 to 49 44 39 to 40 34 to 35 29 to 30 to 25 20 to 19 to 15 9 14 to 10 5 to 4 to 0 24 0.00% Female In terms of measures of deprivation, the charts below show the proportion of people in each index of multiple deprivation decile who are classified as ‘declined and ‘permanent opt out’. This shows that women from less deprived areas are the group most likely to decline or opt out of screening. The total proportion of people classified as ‘declined’ and ‘permanent opt out’ in the lowest two deprivation deciles is 1.87%. In the highest two deprivation deciles, this proportion is 3.78%, which gives a difference in proportions of 1.91%. The odds ratio of being classified as ‘declined’ or ‘permanent opt out’ for people who live in the two least deprived deciles compared to people who live in the two most deprived deciles is 2.06 (χ2 = 28, p<0.0001). Dr Simon Fraser & Dr Laura Edwards July 2010 67 Figures P27 and 28. Gender and deprivation distribution of people classified as ‘declined’ and ‘permanent opt out’ in the Portsmouth and South East Hampshire retinal screening programme as a proportion of people in each deprivation decile Proportion of people in each decile of deprivation classified as 'declined' in the PSEH DRS programme 3.50% Proportion declined 3.00% 2.50% 2.00% 1.50% 1.00% 0.50% 0.00% 1 2 3 4 5 6 7 8 9 10 IMD decile (1 = most deprived, 10 = least deprived) Male Female Proportion of people in each deprivation decile who are classified as 'permanent opt out' in the PSEH DRS programme 2.00% Proporiton opting out 1.80% 1.60% 1.40% 1.20% 1.00% 0.80% 0.60% 0.40% 0.20% 0.00% 1 2 3 4 5 6 7 8 9 10 IMD decile (1 = most deprived, 10 = least deprived) Male Female GP data In order to better understand the population of people not being screened, analysis of GP records focused on those people not recorded as having had retinal screening for two periods of time – in the last year and in the last 3 years (since April 2009 and since April 2007 respectively). Overall, for practices referring to the Portsmouth and South East Hampshire screening programme about 5,100 people with diabetes do not have a record of retinal screening in the last year, and about 2,200 have no record in the last three years. Dr Simon Fraser & Dr Laura Edwards July 2010 68 Figure P29. Age and gender of people from GP practices referring to the Portsmouth and South East Hampshire retinal screening programme with no record of screening in the last three years If this data is presented as a proportion of people with diabetes who have no record of retinal screening in the last 3 years, it appears that young and elderly age groups are more strongly represented. Figure P30. Proportion of people in each age and gender group from GP practices referring to the Portsmouth and South East Hampshire retinal screening programme with no record of screening in the last three years The chart below shows the proportion of people with different types of diabetes who have no record of retinal screening in the last 3 years in their GP records. This shows that, in the practices referring to the Portsmouth and South East Hampshire screening programme, a higher proportion of people with Type 1 diabetes have no record of screening compared to Type 2 diabetics, or those with a general code of ‘diabetes’ in their record (those aged under 15 are excluded from this comparison as they would not be expected to have started screening until 12 years old). Dr Simon Fraser & Dr Laura Edwards July 2010 69 Figure P31. Proportion of people with specified type of diabetes from GP practices referring to the Portsmouth and South East Hampshire retinal screening programme with no record of screening (‘Diabetes mellitus’ refers to those in whom a general diabetes code was used rather than Type 1 or Type 2. ‘All types’ refers to the overall proportion when all are considered together) Proportion with no record of screening Gender and type of diabetes distribution of proportion of people w ith diabetes in GP practices referring to the PSEH DRS program m e w ith no record of retinal screening in the last 3 years 20.00% 15.00% 10.00% 5.00% 0.00% Diabetes Type 1 diabetes Type 2 diabetes mellitus mellitus Male Female All types Total Unfortunately, the current lack of Super Output Area and deprivation measure in the Hampshire Health record means that the picture of deprivation among people with diabetes registered with GPs in this programme is incomplete as shown below. The following chart shows the distribution of people who have no record of screening in the last 3 years with the measure of deprivation using the Index of Multiple Deprivation deciles. (For 576 of the 2212 people with no record of screening in the last 3 years, this data is unavailable due to the source of data being the Hampshire Health record). However, the graph suggests that a greater proportion of people who live in areas with the lowest deprivation scores have no record of screening in the last 3 years. Figure P32. Proportion of people in each decile of the Index of Multiple Deprivation from GP practices referring to the Portsmouth and South East Hampshire retinal screening programme with no record of screening in the last three years 10 ld ec ile s Al 9 8 7 6 5 4 3 2 No t 1 18.00% 16.00% 14.00% 12.00% 10.00% 8.00% 6.00% 4.00% 2.00% 0.00% re co rd ed Proportion with no record of screening Proportion of people in each IMD decile with no record of retinal screening in last 3 years in PSEH GP records IMD decile (1 = most deprived, 10 = least deprived) Male Dr Simon Fraser & Dr Laura Edwards July 2010 Female Total 70 Outcomes Measuring success and equity in terms of outcomes of screening are difficult for a number of reasons: • The need for annual screening • A changing population (people moving into and away from the area, new cases, deaths) • The low incidence of blindness and visual impairment due to diabetes • The need for accurate recording of outcomes • The limitations in ability to query screening and hospital IT systems for outcome data For these reasons, proxy outcomes are often used to monitor the screening programme. Examples are the numbers of referrals from the programme for ophthalmology opinion. Some information for the Portsmouth and South East Hampshire programme is given here. However, for IT reasons, accessing this information at patient level to assess some of the dimensions of equity is problematic. : Table P2. Outcomes from the Portsmouth and South East Hampshire retinal screening programme for 2007 / 2008 Outcome: R1M0 Number of patients, with a final grading outcome of ‘R1 Background retinopathy, M0 No maculopathy’. Outcome: R1M1 Number of patients with a final grading outcome of ‘R1 Background retinopathy, M1 Maculopathy’. Outcome: R2M0 Number of patients, with a final grading outcome of ‘R2 Preproliferative retinopathy, M0 No maculopathy’. Outcome: R2M1 Number of patients with a final grading outcome of ‘R2 Preproliferative retinopathy, M1 Maculopathy’. Outcome: R3M0 Number of patients with a final grading outcome of ‘R3 Proliferative retinopathy, M0 No maculopathy’. Outcome: R3M1 Number of patients with a final grading outcome of ‘R3 Proliferative retinopathy, M1 maculopathy’. 2565 319 129 104 91 99 In view of these challenges, an alternative approach was adopted in conducting this equity audit. In order to compare people having screening with those who appear not to be having screening, the data obtained from GP databases was analysed for two distinct groups of people: • Those with a record in their electronic GP notes of having had retinal screening in the last year (since April 2009) • Those with no record of retinal screening in their electronic GP notes for the last three years (since April 2007). In doing this, it is recognised that there may be many reasons why there is no GP record of screening, including those excluded from screening because of blindness or other reasons, lack of recording by GP practices, or true lack of registration with the programme or non-attendance by the patient. However, this approach was considered reasonable on the basis that recording of retinopathy screening is required as one of the targets in the GP Quality and Outcomes Framework, and recording is therefore likely to be optimized by practices. It was also considered reasonable as those identified are likely to include those people who are either not registered with the screening programme at all, or are not attending. As there is a possible correlation between attendance at retinal screening and other measures of good diabetes management, this group are therefore also potentially at greater risk of other diabetic complications. Identifying their characteristics may therefore be helpful to everyone involved in their diabetes care. The results of this comparison for the Portsmouth and South East Hampshire programme are shown in the table below. From comparison of this data with the numbers given above, it can be seen that there is likely to be incompleteness in the recording of outcomes such as maculopathy and retinopathy in GP records. Dr Simon Fraser & Dr Laura Edwards July 2010 71 Table P 3. Comparison of characteristics between people with a record of retinal screening in the last year and people with no record of screening in 3 years in their GP records. Number Gender Male Female Diabetes type General 'diabetes' code used Type 1 Type 2 Deprivation Percentage in lowest IMD quintile Ethnicity White British Other No record Language of choice English Other No record Retinal screening Recorded as seeing optician / optometrist Retinopathy recorded Background Proliferative or pre-proliferative Maculopathy Laser treatment recorded Visual impairment Blind Partial sight Hypertension PSEH screened within last year PSEH 3-year no screening recorded 13388 2212 Number % Number % 7512 5876 56.11% 43.89% 1247 965 56.35% 43.65% 2257 1998 9133 16.86% 14.92% 68.22% 268 488 1456 12.12% 22.06% 65.82% 1804 13.47% 349 15.78% 5306 383 6559 39.63% 2.86% 48.99% 677 170 1365 30.61% 7.69% 61.71% 5596 138 7559 41.80% 1.03% 56.46% 639 37 1536 28.89% 1.67% 69.44% 717 5.36% 143 6.46% 66 15 7 74 0.49% 0.11% 0.05% 0.55% 3 0 0 13 0.14% 0.00% 0.00% 0.59% 34 120 6742 0.25% 0.90% 50.36% 15 28 870 0.68% 1.27% 39.33% This comparison suggests that a higher proportion of people in the ‘3-year non-attendance’ population lived in more deprived areas compared to the ‘screened in the last year’ population. There may be differences in the type of diabetes between the groups (such as a higher proportion of Type 1 diabetics in the unscreened group), but given the high proportion of those in which a general code for diabetes was used, it is not possible to comment on this with any certainty. Similarly, for ethnicity and language groups, there appear to be differences between the groups with a higher proportion of people in the unscreened group not being white British and having a language other than English as their preferred language, but these differences are obscured by lack of completeness of recording. A slightly higher proportion in the non-screened group appears to opt for optometrist attendance. A lower proportion in the unscreened group had a record of retinopathy and laser treatment recorded, but a higher proportion of blindness. The high prevalence of hypertension in both groups is a particular concern for the unscreened group as high blood pressure is associated with an increased risk of developing retinopathy. Dr Simon Fraser & Dr Laura Edwards July 2010 72 North Hampshire Diabetic Retinopathy Screening Programme Dr Simon Fraser & Dr Laura Edwards July 2010 73 Description of the population There are 18,967 patients currently registered to the North Hampshire service (July 10). The active programme size as at July 10 was 15,192 (80%). The archived population on the system, (those not currently being screened by the programme) at July 10 was 3775 (20%). Patients may be classed as archived if they are currently under 12 yrs of age, have moved out of area, have been deemed physically or mentally incapacitated, returned mail received marked ‘wrong address’ or are currently receiving screening as part of their care from an ophthalmologist. Background of service The North Hampshire Diabetic Retinopathy Screening programme was initially established as part of the South Wiltshire retinal screening service via the Medical Photography department at Salisbury. The initial screening population was approximately 5000 patients and the service operated via screeners using mobile equipment in GP surgeries. The service screened the complete diabetic population for a single practice before moving on to the next surgery. Guidance from the National Retinopathy Screening Programme in 2007 stipulated a minimum programme size of 12,000 patients, and so the programme expanded to provide screening for North Hampshire. It was not feasible for the same model of screening to be applied in North Hampshire General Practices and so a different model was instigated using fixed cameras. The service now covers the North of Hampshire and some practices in the West of Hampshire (where it continues to deliver screening at GP surgeries). Patient list and care pathway The list of patients to be screened is drawn from the programme database and the list of all active and archived patients (excluding deceased patients) is sent to the GP surgery for confirmation 12 weeks prior to patient invitation. This is done to update records and check whether any archived patients should be reactivated. Key screening standards include: 2 To invite all eligible persons with known diabetes to attend for the DR screening test. 3 To ensure database is accurate 4 To maximise the number of people taking the test 15 To ensure timely re-screening Invitations are then sent out to patients approximately four weeks later. If there is no response then two further invitations are sent out including an opt-out form and the GP is informed that there has been no patient response. Immediately after retinal imaging, the screener performs a ‘disease/ no-disease’ check (with the patient present). If the status is defined as ‘disease’ then the patient is informed and given an impression of severity and likely need for further clinical review. Two graders review the images and the result is sent to the patient and GP and a referral generated to Ophthalmology if necessary. Screeners identifying an ‘urgent’ finding inform the secondary grader of the need for more urgent review. Current care under ophthalmology is elicited by reference to the GP (this is recognised as a potential area of weakness of the system. The service has made a business case for a ‘Failsafe Officer’ who would check these patients as part of their remit). Current guidelines state that 10% of those screened as ‘no disease’ should also be audited by the graders. Key screening standards include: 6 To ensure grading is accurate. 7 To ensure optimum workload for graders, to maintain expertise. 8 To ensure timely referral of patients with R3 (fast-track) screening results (e-mailed or faxed). 9 To ensure GP and patient are informed of all test results. Staff: There are currently eight screeners working for the service, (6.5 whole time equivalents). All screeners are registered for, and taking modules of, the City and Guilds diploma in retinal screening (the expected standard), and two have completed the six mandatory modules (though are yet to be fully certified). The service currently has two screeners operating as ‘graders’. These are the Programme Manager and Deputy Programme Manager. All graders complete a test grading set once a month and have a monthly training day. Dr Simon Fraser & Dr Laura Edwards July 2010 74 Figures N1 & N2. Care pathways in the North Hampshire Diabetic Retinopathy Screening programme Age, gender, type of diabetes, measures of deprivation The age, gender and type of diabetes distributions of those registered with the programme and their referring GP practices are shown in the charts below. They show that there are more men than women registered with the programme, that largest proportion of men are between 60 and 75, and the largest proportion of women are between 65 and 80. ‘Active’ and ‘archived refer to the individuals’ status within the programme (see above). The second chart is from the GP data. (It should be remembered that the numbers are less in the GP data because of the lack of completeness of data from the Hampshire Health record). Dr Simon Fraser & Dr Laura Edwards July 2010 75 Figure N3. Age and gender distribution using data from the North Hampshire Diabetic Retinopathy Screening programme Age gender distribution of 'active' and 'archived' people in the North Hants DRS programme 1400 1200 Number 1000 800 600 400 200 Male 'active' Female 'active' Male archived 105+ 95 to 99 100 to 104 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 5 to 9 10 to 14 0 to 4 0 Female archived Figure N4. Age and gender distribution using data from GP practices referring to the North Hampshire Diabetic Retinopathy Screening programme This shows that, despite the lack of completeness of GP data available, the population distributions are very similar. Dr Simon Fraser & Dr Laura Edwards July 2010 76 Figure N5. Population pyramid showing proportions of each age group and gender registered with the North Hampshire Diabetic Retinopathy Screening programme Population pyramid of people registered with the North Hants Diabetic Retinopathy Screening Programme 105+ 100 to 104 95 to 99 90 to 94 85 to 89 80 to 84 75 to 79 70 to 74 65 to 69 age group 60 to 64 55 to 59 50 to 54 45 to 49 40 to 44 35 to 39 30 to 34 25 to 29 20 to 24 15 to 19 10 to 14 5 to 9 0 to 4 10.00% 8.00% 6.00% 4.00% 2.00% 0.00% 2.00% 4.00% 6.00% 8.00% Percentage of people Male Female Figure N6. Age and type of diabetes distribution using data from GP practices referring to the North Hampshire Diabetic Retinopathy Screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 77 It is noticeable that by far the majority of the burden of diabetes in the population is from Type 2 diabetes. The population registered with the programme comes from a variety of socio-demographic backgrounds. One way of expressing this is to look at rankings of the Index of Multiple Deprivation (IMD) - a deprivation index at a small area level known as Lower Super Output Areas (LSOAs). LSOAs have between 1000 and 3000 people living in them with an average population of 1500 people. In most cases, these are smaller than wards, thus allowing the identification of small pockets of deprivation. The IMD combines a number of factors covering a range of health, economic, social and housing issues into a single deprivation score for each small area in England. There are 32,482 LSOAs in England. The LSOA ranked 1 by the IMD 2007 is the most deprived and that ranked 32,482 is the least deprived. A common way to summarise IMD ranking is to divide the ranks into quintiles and deciles, in other words to describe ‘the most deprived 20% or 10%’ and ‘the least deprived 20% or 10%’. Hampshire PCT rank of average Index of Multiple deprivation is 147th out of 152 PCTs (compared to Southampton City 70th and Portsmouth City 71st, where 1 is most deprived, and 152 least deprived). Hampshire’s most deprived Lower Super Output Area is in Rushmoor. The chart below shows the number and gender of people registered with the North Hampshire screening programme who live in each of the 10 national deciles of multiple deprivation (where 1 is most deprived and 10 is least deprived). Figure N7. Index of Multiple Deprivation distribution for those registered with the North Hampshire Diabetic Retinopathy Screening programme Numbers of people registered with the North Hants DRS Programme by deprivation deciles 7000 6000 Number 5000 4000 3000 2000 1000 10 9 8 7 6 5 4 3 2 1 No t re co rd ed 0 IMD decile (1 = most deprived, 10 = least deprived) Male Female Total This shows that the majority of people registered with the North Hampshire retinopathy screening programme live in areas that are relatively less deprived by national comparison. 2% of those registered with the programme live in areas within IMD deciles 1, 2, and 3, and 65% live in areas within IMD deciles 8, 9, and 10. Ethnicity Recording of ethnicity data is incomplete in many NHS contexts, and ethnicity definitions vary between organisations and between different years of the national census. Despite these limitations, there is an impression that ethnicity information is being more routinely collected, and ethnicity and language issues may be important in terms of equity. The GP data requested therefore included a search for ethnicity status. For practices referring to the North Hampshire programme, a summary of this information for the main groups for which data was recorded is given below: Dr Simon Fraser & Dr Laura Edwards July 2010 78 Table N1. Ethnicity recording in North and West Hampshire GP practices Ethnic group Not recorded White British White other Indian Other Asian Black African Black Caribbean Number 8934 3686 982 88 223 44 27 Proportion of total 63.58% 26.23% 6.99% 0.63% 1.59% 0.31% 0.19% It can be seen from this that, for the majority of people registered with the screening programme, ethnicity information is not recorded. This makes it difficult to draw conclusions about equity between ethnic groups in the analysis of the data in this audit. There are important specific areas in North Hampshire with prominent ethnic minority groups, most notably the Nepali communities in Rushmoor and Basingstoke (an estimate of approximately 9000 people). They may be at particular risk of diabetes and it’s complications and may be less likely, for a variety of reasons, to engage with screening. It is estimated that there are significant language and literacy difficulties in this population. Provision The North Hampshire retinopathy screening programme is delivered via static cameras in the following locations • Rooksdown Surgery (Park Prewett Medical Centre, Basingstoke), • Aldershot Centre for Health. • Proposal for an additional camera, which would be used at Bordon and Alton. Historically, the service considered using mobile cameras but decided on a fixed location model except for the part of the service in the west of Hampshire where GP practices are visited by a screener (an extension of the South Wiltshire service). In previous years the service has moved one of the cameras to Chase Community Hospital for approximately 4 months of the year. Due to increase in patient numbers at the main screening sites, this has not continued this year. New referrals to the service are offered screening at Park Prewett or Aldershot. The three maps below show the screening locations and the number of patients registered with the programme in each area. Dark red areas are those with higher numbers of patients registered with the programme. It can be seen that there are three distinct areas with a higher density of patients which are some way from the location of the static cameras: North West of Basingstoke towards Kingsclere, the area around Fleet and Hartley Wintney, and around Alton and Bordon. Dr Simon Fraser & Dr Laura Edwards July 2010 79 Figure N8. Map of Screening locations and numbers of patients registered with the North Hampshire Diabetic Retinopathy Screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 80 Figure N9. Map of Screening locations and numbers of patients in North East Hampshire registered with the North Hampshire Diabetic Retinopathy Screening programme Figure N10. Map of Screening locations and numbers of patients in West Hampshire registered with the North Hampshire Diabetic Retinopathy Screening programme Dr Simon Fraser & Dr Laura Edwards July 2010 81 Dr Simon Fraser & Dr Laura Edwards July 2010 82 Access Access to the screening service is determined by several factors including the geographical location of services, the timing of service provision, and the mobility of the population served. The Rooksdown Practice is based in Park Village, an area of regeneration on the Park Prewett site. The practice is currently housed in temporary accommodation with a new housing development being constructed opposite the site (135 residential units are now occupied on the Harness House site (a Housing Association scheme) and 50 units opposite the existing surgery are also now occupied). Positioned behind a metal fence the site is not visually welcoming. There are two possible routes to access Rooksdown practice. There were no signs noted for the Diabetic Retinopathy screening service at either road leading to Rooksdown practice. It was also noted that the nearest bus stop was approximately 250m walk. Wheelchair access was available. Appointments in the North Hampshire programme are between 9.30am and 16.15, 5 days a week. The service closes for one hour at lunchtime. Appointments are at 15-minute intervals and patients are expected to be at the site for around 45 minutes. The service sees 24 patients per day with 2 screeners tending to each clinic. Access for those patients in the West of Hampshire is easier, with screening taking place in their own GP surgery. Uptake Uptake of screening is challenging to assess for an annual screening programme. Proxy measures, such as did not attend (DNA) rates can be used to measure uptake. From this audit, this can be assessed from three perspectives: • Those recorded as offered screening who were actually screened • Those recorded as ‘DNA with no subsequent attendance in the following year’ by the screening programme • Those recorded in GP records as not having attended retinopathy screening. Each of these has limitations, such as uncertainty about the completeness of recording of screening at practice level, and the problems encountered with accurately interrogating the screening programme database. However, examining the characteristics of those not attending using these groups gives interesting insights into the diabetic population, which may be useful in reshaping aspects of the service Offered, screened and DNA For the year April 2009 to March 2010, the programme screened 9622 patients, which is 84% of its ‘active’ registered population, and 63% of the total population of people registered with the programme. The proportion of people with diabetes who DNA screening varies widely between different practices in the North Hants programme (range 0% to 37%). This is an important variation, which may reflect differences in the demography of patients registered, their awareness of the programme, or their ability to access the screening locations. This may warrant further exploration in order to better understand the differences and identify potential causes. GP records In order to understand the population of people not being screened, analysis of GP records focused on those people not recorded as having had retinal screening for the last 3 years (since April 2007). Overall for practices referring to the North Hampshire screening programme, about 4,900 people with diabetes do not have a record of retinal screening in the last year, and about 1,500 have no record of screening in the last three years. The charts below show that younger people and the very elderly are those more likely to have no record of screening. More men have no record of screening, but, for some age groups, the proportion of women with no record of screening is higher. Dr Simon Fraser & Dr Laura Edwards July 2010 83 Figure N11. Age and gender of people from GP practices referring to the North Hampshire Diabetic Retinopathy Screening programme with no record of screening in the last three years Figure N12. Proportion of people in each age and gender group from GP practices referring to the North Hampshire Diabetic Retinopathy Screening programme with no record of screening in the last three years Dr Simon Fraser & Dr Laura Edwards July 2010 84 Figure N13. Proportion of people with type of diabetes from GP practices referring to the North Hampshire Diabetic Retinopathy Screening programme with no record of screening (‘Diabetes mellitus’ refers to those in whom a general diabetes code was used rather than Type 1 or Type 2. ‘All types refers to the overall proportion when all are considered together) There does not appear to be a clear association between types of diabetes and non-attendance at screening. Figure N14. Proportion of people in each Index of Multiple deprivation decile with no record of retinal screening in the last three years in their GP records 16.00% 14.00% 12.00% 10.00% 8.00% 6.00% 4.00% 10 ld ec ile s Al 9 8 7 6 5 4 3 No 2 2.00% 0.00% re co rd Proportion with no record of screening Proportion of people residing in each deprivation decile who have no record of retinal screening in their GP record in the last 3 years IMD decile (1 = most deprived, 10 = least deprived) Male Female Total The lack of completeness of deprivation data means that it is difficult to draw firm conclusions about this dimension of equity with respect to those with no record of screening. Dr Simon Fraser & Dr Laura Edwards July 2010 85 Outcomes Measuring success and equity in terms of outcomes of screening are difficult for a number of reasons: • The need for annual screening • A changing population (people moving into and away from the area, new cases, deaths) • The low incidence of blindness and visual impairment due to diabetes • The need for accurate recording of outcomes • The limitations in ability to query screening and hospital IT systems for outcome data For these reasons, proxy outcomes are often used to monitor the screening programme. Examples are the numbers of referrals from the programme for ophthalmology opinion. However, for IT reasons, accessing this information at patient level to assess some of the dimensions of equity is problematic. In view of these challenges, an alternative approach was adopted in conducting this equity audit. In order to compare people having screening with those who appear not to be having screening, the data obtained from GP databases was analysed for two distinct groups of people: • Those with a record in their electronic GP notes of having had retinal screening in the last year (since April 2009) • Those with no record of retinal screening in their electronic GP notes for the last three years (since April 2007). In doing this, it is recognised that there may be many reasons why there is no GP record of screening, including those excluded from screening because of blindness or other reasons, lack of recording by GP practices, or true lack of registration with the programme or non-attendance by the patient. However, this approach was considered reasonable on the basis that recording of retinopathy screening is required as one of the targets in the GP Quality and Outcomes Framework, and recording is therefore likely to be optimized by practices. It was also considered reasonable as those identified are likely to include those people who are either not registered with the screening programme at all, or are not attending. As there is a possible correlation between attendance at retinal screening and other measures of good diabetes management, this group are therefore also potentially at greater risk of other diabetic complications. Identifying their characteristics may therefore be helpful to everyone involved in their diabetes care. The results of this comparison for the North Hampshire programme are shown in the table below. Dr Simon Fraser & Dr Laura Edwards July 2010 86 Table N2. Comparison of characteristics between people with a record of retinal screening in the last year and people with no record of screening in 3 years in their GP records. Number Gender Male Female Diabetes type General 'diabetes' code used Type 1 Type 2 Deprivation Percentage in lowest IMD quintile Ethnicity White British Other No record Language of choice English Other No record Retinal screening Recorded as seeing optician / optometrist Retinopathy recorded Background Proliferative or pre-proliferative Maculopathy Laser treatment recorded Visual impairment Blind Partial sight Hypertension NH screened within last year NH 3-year no screening recorded 10359 1552 Number % Number % 5906 4453 57.01% 42.99% 877 675 56.51% 43.49% 612 1596 8151 5.91% 15.41% 78.69% 116 244 1192 7.47% 15.72% 76.80% 154 1.49% 11 0.71% 3122 1198 6039 30.14% 11.56% 58.30% 289 202 1080 18.62% 13.02% 69.59% 1894 64 8401 18.28% 0.62% 81.10% 238 16 1292 15.34% 1.03% 83.25% 990 9.56% 263 16.95% 18 9 21 101 0.17% 0.09% 0.20% 0.97% 1 0 1 8 0.06% 0.00% 0.06% 0.52% 37 72 5173 0.36% 0.70% 49.94% 18 15 632 1.16% 0.97% 40.72% This comparison suggests that a lower proportion of people in the ‘3-year non-attendance’ population lived in more deprived areas compared to the ‘screened in the last year’ population. Distribution of type of diabetes appears to be very similar between the groups. For ethnicity and language groups, there appears to be differences between the groups with a higher proportion of people in the unscreened group not being white British and having a language other than English as their preferred language, but these differences are obscured by lack of completeness of recording making firm conclusions difficult. A higher proportion in the non-screened group appears to opt for optometrist attendance. A lower proportion in the unscreened group had a record of retinopathy and laser treatment recorded, but a higher proportion of blindness and visual impairment. The high prevalence of hypertension in both groups is a particular concern for the unscreened group as high blood pressure is associated with an increased risk of developing retinopathy. Dr Simon Fraser & Dr Laura Edwards July 2010 87 Patient Experience Dr Simon Fraser & Dr Laura Edwards July 2010 88 Patient experience 110 questionnaires were distributed at two events; a diabetes awareness day conference in Southampton, and the Southampton Mela festival. 47 responses were received (a response rate of 42.7%). The results are summarised in the table below: Table 1. Results of patient experience survey Gender M F Age group <20 21 to 40 41 to 60 61 to 80 Over 80 Ethnicity British Indian Other white Other Asian Length of time with diabetes 0 to 5 years 6 to 10 years 11 to 15 years >15 years Type of diabetes Diet controlled alone Tablet controlled alone Insulin controlled alone Tablet + insulin controlled Had yearly eye screening Screening location Optician Eye screening van Diabetic resource centre Hospital NHS treatment centre Knowledge of reason for screening Receive letter of invitation Appointment easy to attend Difficulties with aspects of the service None Appointment date / time Changing appointment Number % of total 15 33 31% 69% 0 3 8 34 3 0% 6% 17% 71% 6% 44 2 1 1 92% 4% 2% 2% 12 14 13 9 25% 29% 27% 19% 5 20 15 7 46 10% 42% 31% 15% 96% 5 30 1 13 2 10% 63% 2% 27% 4% 46 46 46 96% 96% 96% 40 2 3 83% 4% 6% Comments Screening centre location Transport to / from 2 3 4% Treatment Centre Portsmouth 6% Treatment Centre Portsmouth Other Problems with facilities Treatment for eye problems related to diabetes 1 1 2% Results sound frightening in the letter 2% Van claustrophobic, prefers RSH 4 8% Various Dr Simon Fraser & Dr Laura Edwards July 2010 89 These results show the following: • The majority of people completing the questionnaire were female (which is not representative of the predominant diabetic population) • The majority of respondents were aged between 60 and 80, and described their ethnicity as British. • There was good representation of different groups people in terms of length of time with diabetes and type of diabetes. • The majority of respondents had had yearly eye screening, and most accessed the eye screening van. A small proportion used their optician as the screening location of choice. • The large majority knew why eye screening is done, received invitation for screening, found appointments easy to attend, and had no other difficulties with the service. • A small number found the screening location in Portsmouth difficult to travel to, and one person found the eye screening van claustrophobic. Given the nature of the sampling method used, it is important to recognise that this survey is subject to selection bias (as it collected opinion only from those who attended the events at which the questionnaire was distributed who were willing to complete a questionnaire). This needs to be born in mind in the interpretation of these results. It may be useful for the screening services to consider establishing patient user groups to further explore aspects of the screening programmes. Dr Simon Fraser & Dr Laura Edwards July 2010 90 Limitations of this audit This audit was conducted using data from several sources – the screening services, GP practices, the Hampshire Health Record, and survey data. A strength of the audit is therefore the ability to look at the problem from these different perspectives. However, the inability to link across datasets reduces the power of this study to identify specific groups of people at risk of not being screened. As with any cross sectional study, it is not possible to attribute causality between exposures and outcomes, but only to make observations and develop hypotheses. Another weakness was the unexpected lack of deprivation measure within the Hampshire Health Record. It is hoped that this will be rectified soon, which may facilitate and improve future such audits. It was recognised that there are many existing pressures on GP practices to conduct Miquest searches for other reasons, and the lack of response from some surgeries probably reflects this. As described already, the convenience sampling method used for the survey could lead to selection bias. In addition to this, there were no additional resources to conduct the survey in other locations that might more accurately reflect the opinions of people in Portsmouth, South East Hampshire, and North Hampshire. Dr Simon Fraser & Dr Laura Edwards July 2010 91 Conclusions This health equity audit has identified patient factors (such as the groups of people at most risk of retinopathy, those less able to access and take up the opportunity for retinal screening), provider factors (such as the need to reconsider the location and timing services to improve accessibility, and the need for recording of important dimensions of equity), and system factors (such as the weaknesses of the current IT systems, and geographical overlap between individual screening programmes). We therefore make the following recommendations for the screening programmes Recommendations for all programmes • • • • • • • IT issues – recommendation to lobby national programme for improvements in IT system in order to be able to query the database and more easily obtain information on people at each stage of the system. Need to improve recording of important dimensions of potential inequity in order to be able to re audit, for example improving type of diabetes and ethnicity recording. Need to improve the facility and uptake of recording of outcomes in the eye units, and seek IT solutions to be able to link data from the screening service to the eye units and vice versa. Linkage with GP systems has been demonstrated by the Hampshire Health Record, who may therefore be well placed to be involved in this process. Consideration should be given to timing of appointments to make screening more accessible to those in employment. Consideration should be given to location of services – particularly in Portsmouth and North Hampshire, where the static cameras limit screening locations and potentially reduce accessibility. Consideration should be given to methods for targeting particular groups who have been shown to have a higher chance of not being screened – particularly men, the young and the very elderly, and those from more deprived areas Consideration should be given to awareness raising among GP practices of those with no record of retinal screening in order to combat an ‘inverse care law’ effect in this population. This audit has shown that there are examples of good practice in each of the three screening programmes in Hampshire and the Isle of Wight. There is therefore potential to learn from one another and for consideration to be given for a more coordinated, centralised, screening programme across SHIP with adequate funding for IT and admin support. Dr Simon Fraser & Dr Laura Edwards July 2010 92 References 1. National Screening Programme for Diabetic Retinopathy. http://www.retinalscreening.nhs.uk/pages/default.asp?id=2 2. Health Equity Audit – a guide for the NHS. Department of Health. Dec 2003. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_4084138 3. Health Equity Audit made simple. A briefing for Primary Care Trusts and Local Strategic Partnerships. Health Development Agency. Working document January 2003. Available at: http://www.nice.org.uk/aboutnice/whoweare/aboutthehda/hdapublications/health_equity_audit_m ade_simple.jsp 4. What is diabetes? Information from Diabetes UK. http://www.diabetes.org.uk/Guide-todiabetes/Introduction-to-diabetes/What_is_diabetes/ 5. A Needs Assessment of Diabetic retinopathy screening in Southampton City Primary Care Trust (SCPCT) area. Dr D Chase, January 2008. 6. Pardhan S, Mahomed I. The clinical characteristics of Asian and Caucasian patients on Bradford’s Low Vision Register. Eye 2002; 16: 572-576. 7. Spijkerman AMW, Dekker JM, Nijpels G, Adriaanse MC, Kostense PJ, Ruwaard D, Stehouwer CDA, Bouter LM, Heine RJ. Microvascular Complications at Time of Diagnosis of Type 2 Diabetes Are Similar Among Diabetic Patients Detected by Targeted Screening and Patients Newly Diagnosed in General Practice. The Hoorn Screening Study. Diabetes Care 2003; 26(9): 2604-2608 8. Millett, C, Dodhia H. Diabetes retinopathy screening: audit of equity in participation and selected outcomes in South East London. Journal of Medical Screening 2006; 13(3): 152-5. 9. Nsiah-Kumi P, Ortmeier SR, Brown AE. Disparities in Diabetic Retinopathy Screening and Disease for Racial and Ethnic Minority Populations – A Literature Review. Journal of the National Medical Association 2009; 101(5): 430-437 10. Farrington E. Wirral Digital Diabetic Retinopathy Screening Programme Health Equity Audit. Aug 209. http://info.wirral.nhs.uk/document_uploads/Publications/DigitalDiabeticRetinopScreenEquitAudit _d37e6.pdf . Accessed March 2010 11. Improving Access to Derbyshire Diabetic Retinopathy Screening Services http://www.retinalscreening.nhs.uk/userFiles/File/DERBYSHIREStaff%20Celebration%20Event %202007%20Poster%20final%20.pdf Accessed March 2010 12. Litwin AS, Clover A, Hodgkins PR, Luff AJ. Affluence is not related to delay in diagnosis of Type 2 diabetes as judged by the development of diabetic retinopathy. Diabetic Medicine 2002; 19(10): 843-846 13. Scanlon PH, Carter SC, Foy C, Husband RFA, Abbas J, Bachmann MO. Diabetic retinopathy and socioeconomic deprivation in Gloucestershire. J Med Screen 2008;15:118-121 14. Cockings S, Martin D, Leung S, Population24/7: space–time specific population surface modelling. http://www.southampton.ac.uk/geography/research/phew/pop247/index.html 15. Portsmouth City Council information from www.Portsmouth.gov.uk. Accessed July 2010 Dr Simon Fraser & Dr Laura Edwards July 2010 93 Appendices Dr Simon Fraser & Dr Laura Edwards July 2010 94 Appendix 1 – GP Practices referring patients to each of the retinopathy screening programmes Southampton, South West Hampshire and Isle of Wight Screening Programme PCT Practice Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Isle of Wight PCT Hampshire PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Pyle Street Surgery Carisbrooke Health Centre Brighstone Surgery (South Wight) Cowes Medical Centre East Cowes Health Centre Tower House Surgery St Helens Medical Centre Esplanade Surgery Garfield Road Surgery Argyll House Surgery Medina Healthcare - Wootton Beech Grove Surgery - BRADING Sandown Health Centre Shanklin Medical Centre Grove House Surgery Ventnor Medical Centre Brookside Health Centre Whitchurch Surgery Homeless Healthcare Team Nichols Town Surgery St Marys Surgery (Southampton) Bargate Medical Centre Alma Road Surgery (Portswood) Newtown Health Clinic (branch of Alma Rd) Walnut Tree Surgery Atherley House Surgery The Grove Medical Practice Raymond Road Surgery Hill Lane Surgery Shirley Avenue Surgery Victor Street Surgery Stoneham Lane Surgery Burgess Road Surgery Brook House Surgery Cheviot Road Surgery Regents Park Surgery Aldermoor Health Centre Lordshill Health Centre Highfield Health University Health Service Mulberry House Surgery Linfield Surgery St Denys Surgery Portswood Road Surgery Bitterne Park Surgery Midanbury Surgery Townhill Surgery Dr Simon Fraser & Dr Laura Edwards July 2010 Practice code J84014 J84011 J84016 J84015 J84004 J84012 J84007 J84005 J84602 J84008 J84017 J84020 J84013 J84010 J84018 J84003 J84019 J82214 J82662 J82024 J82081 J82631 J82122 J82122 J82605 J82115 J82088 J82126 J82207 J82062 J82022 J82087 J82001 J82213 J82062 J82203 J82092 J82002 J82663 J82080 J82183 J82619 J82612 J82607 J82171 J82622 J82180 Postcode PO30 1JW PO30 1NR PO30 4BB PO31 7ER PO32 6RR PO33 1LP PO33 1UG PO33 2EH PO33 2PT PO33 2QG PO33 4PR PO36 0DE PO36 9GA PO37 7HR PO38 1EU PO38 1EZ PO40 9DT RG28 7AE SO14 0LT SO14 0YG SO14 1LT SO14 2EG SO14 6UX SO14 0WX SO15 2HQ SO15 3FH SO15 3UA SO15 5AL SO15 5DD SO15 5RP SO15 5SY SO16 2AB SO16 3BD SO16 4 NZ SO16 4AH SO16 4RJ SO16 5ST SO16 8HY SO17 1BJ SO17 1BJ SO17 1PJ SO17 2GD SO17 2GN SO17 2NJ SO18 1HZ SO18 2PA SO18 3RA 95 Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Southampton City PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Harefield Surgery Thornhill Park Surgery Bath Lodge Practice Bitterne Surgery Chessel Surgery - Sholing Spitfire Court Surgery Canute Surgery Woolston Lodge Surgery The Old Fire Station Surgery Weston Lane Surgery St Peters Surgery Twin Oaks Medical Centre The Arnewood Practice New Milton Health Centre Barton Surgery West Meon Surgery Mansfield Park Surgery Wickham Surgery Stockbridge Surgery Twyford Surgery Gratton Surgery Badger Farm Surgery St Paul's Practice St Clements Partnership Alresford Surgery St Lukes Surgery Hedge End Medical Centre West End Surgery Blackthorn Health Centre Bursledon Surgery Bishops Waltham Surgery Totton Health Centre Testvale Surgery Forest Gate Surgery Milford Medical Centre Brockenhurst Surgery Sway Surgery The Wistaria Practice Chawton House Surgery Lyndhurst Surgery Forestside Medical Practice - Dibden Purlieu Hythe Medical Centre Waterside Health Centre - Green Practice Waterside Health Centre - Red Practice Waterfront Garden Surgery Boyatt Wood Surgery St Andrews Surgery The Old Anchor Inn Surgery Stokewood Surgery Eastleigh Health Centre (Dr Drabu) Pineview Practice Nightingale Surgery Alma Road Surgery (Romsey) Dr Simon Fraser & Dr Laura Edwards July 2010 J82187 J82622 J82141 J82040 J82101 J82651 J82182 J82076 J82128 J82187 J82208 J82151 J82007 J82029 J82166 J82036 J82059 J82034 J82016 J82116 J82106 J82130 J82050 J82035 J82124 J82192 J82089 J82008 J82051 J82188 J82064 J82097 J82132 J82112 J82139 J82129 J82129 J82139 J82075 J82146 J82072 J82645 J82057 J82057 J82156 J82169 J82071 J82634 J82018 J82620 J82020 J82186 J82074 SO18 5JL SO18 5TS SO18 6BT SO19 4AA SO19 4AA SO19 7TN SO19 9AL SO19 9AL SO19 9AN SO19 9GH SO19 9RL BH238AD BH25 5JP BH25 6EN BH25 7EN GU32 1LR GU34 5EW PO17 5JL SO20 6HG SO21 1QY SO21 3LE SO22 4QB SO22 5DD SO23 8AD SO24 9JL SO30 2US SO30 4FQ SO303PY SO31 4NQ SO31 8DQ SO32 1GR SO40 3ZN SO40 7GL SO40 8WU SO41 0PG SO41 6BA SO41 6BA SO41 9GJ SO41 9ND SO43 7EW SO45 4JA SO45 4ZD SO45 5WX SO45 5WX SO45 6AW SO50 4QP SO50 5PT SO50 6LQ SO50 8AU SO50 9AG SO50 9AG SO51 7QN SO51 8ED 96 Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Abbey Mead Surgery North Baddesley Health Centre The Fryern Surgery The Brownhill Surgery Parkside Family Practice St Francis Surgery St Marys Surgery (Andover) Adelaide Medical Centre Charlton Hill Surgery Andover Health Centre Shepherds Spring Medical Centre Derry Down Clinic Dr Simon Fraser & Dr Laura Edwards July 2010 J82145 J82121 J82019 J82190 J82063 J82143 J82103 J82053 J82025 J82017 J82082 J82629 SO51 8EN SO52 9EP SO53 2LH SO53 2ZB SO53 4SD SO53 4ST SP10 1DP SP10 1HA SP10 3JY SP10 3LD SP10 5DE SP11 6BS 97 Portsmouth and South East Hampshire screening programme Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Portsmouth City PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Queens Road Surgery The Osbourne Practice Somers Town Health Centre The Health House Waverley Road Surgery Southsea Medical Centre Kirklands, Copnor Rd Lake Road Health Centre Northern Road Surgery Sunnyside Medical Centre The Baffins Surgery Drayton Surgery Cosham Health Centre Hanway Road Surgery Derby Road Group Practice Portsdown Group Practice Campbell Road Surgery The Devonshire Practice Ramilies, Victoria Road surgery Victory Surgery Salisbury Road Surgery John Pounds Surgery Heyward Road Surgery Milton Park Practice University Surgery Eastney Surgery Somerstown Health Centre Guildhall Walk Health Centre Rowlands Castle Surgery Emsworth Practice Bosmere Medical Practice Havant Surgery, Suite D, Havant Health Centre Waterside Medical Practice, Hayling Island The Curlew Practice, Suite E, Havant Health Centre Waterbrook Medical Practice The Staunton Surgery, Havant Health Centre Stakes Lodge Surgery The Swan Surgery Denmead Doctors Surgery Forest End Surgery The Clanfield Surgery Cowplain Family Practice Hillbrow & Newtown Practice The Homewell Practice, Suite B Havant Health Centre The Grange Surgery The Elms Practice Queenswood Surgery Riverside Partnership Horndean Practice Park Lane Medical Centre Middle Park Medical Centre Dr Simon Fraser & Dr Laura Edwards July 2010 J82004 J82028 J82031 J82038 J82055 J82060 J82073 J82085 J82086 J82090 J82091 J82102 J82114 J82117 J82149 J82155 J82159 J82165 J82168 J82170 J82175 J82177 J82191 J82194 J82199 J82212 J82665 Y02526 J82005 J82009 J82010 J82014 J82021 J82032 J82037 J82041 J82093 J82098 J82119 J82134 J82147 J82163 J82164 J82196 J82201 J82210 J82609 J82167 J82640 J82646 J82650 PO2 7NX PO5 3ND PO5 4NJ PO6 3AP PO5 2PW PO5 1AT PO3 5AF PO1 4JT PO6 3DS PO4 8TA PO3 6BH PO6 1PA PO6 3AW PO1 4ND PO2 8HW PO7 5XP PO5 1RN PO4 9EH PO5 2DB PO2 8AL PO4 9QX PO1 3DU PO4 ODY PO4 8QZ PO1 2BH PO4 9HU PO5 4NJ PO1 2DD PO9 6BN PO10 7DD PO9 1DQ PO9 2AZ PO11 9AP PO9 2AZ PO7 6AJ PO9 2AZ PO7 8NS GU32 3AB PO7 6NR PO7 7AH PO8 0QL PO8 8DZ GU30 7DR PO9 2AZ GU31 4JR PO11 9AP PO8 8DA GU33 7AD PO8 0AA PO9 3HN PO9 4AB 98 Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Greywells Surgery The Village Practice, Cowplain Gosport Medical Centre Portchester Health Centre Locks Road Surgery The Centre Practice Gudge Heath Lane Surgery Jubilee Surgery Stoke Road Medical Practice Bury Road Surgery Forton Medical Centre Stubbington Medical Practice Waterside Medical Centre Brune Medical Centre Brockhurst Medical Centre Bridgemary Medical Centre Fareham Health Centre Westlands Medical Centre Lockswood Surgery The Lee-On-The-Solent Medical Practice Brook Lane Surgery Manor Way Surgery Rowner Health Centre Dr Simon Fraser & Dr Laura Edwards July 2010 J82657 Y01281 J82006 J82012 J82023 J82026 J82033 J82044 J82083 J82084 J82100 J82104 J82113 J82127 J82133 J82152 J82154 J82161 J82174 J82215 J82216 J82648 J82669 PO9 5AA PO8 8XL PO12 2JX PO16 9TU SO31 7ZL PO16 7ER PO15 6QA PO14 4EH PO12 1PA PO12 3PR PO12 3JP PO14 2JP PO12 1BA PO13 0EW PO12 3AX PO13 0HR PO16 7ER PO16 9AE SO31 6DX PO13 9JG SO31 7DQ PO13 9JG PO13 9SP 99 North Hampshire screening programme Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Hampshire PCT Giffard Drive Surgery Liphook Surgery Victoria Practice (Aldershot CFH) Ringwood Medical Centre Badgerswood Surgery Oakley & Overton Surgery Hartley Corner Surgery Oaklands Medical Centre Bramblys Grange Medical Practice Odiham Health Centre South Ham Surgery Southlea Surgery Milestone Surgery Gillies Health Centre Bermuda Practice Clift Surgery Holmwood Health Centre Marlowe Partnership (Shakespeare) Richmond Surgery Fleet Medical Centre Alexander House Surgery Hackwood Partnership Jenner House Surgery Fordingbridge Surgery Fleet Surgery (Branksomewood) Chawton Park Surgery Hook & Hartly Wintney Surgery The Border Practice Church Grange (Crown Heights) Cornerways Medical Centre The Wilson Practice Riverside Surgery Alexandra Surgery Mayfield Medical Centre Pinehill Surgery Southwood Practive Bentley Village Surgery Monteagle Surgery Chineham Medical Practice Highview Surgery The Rooksdown Practice Boundaries Surgery New Crondall Surgery North Camp Surgery Kingsclere Medical Practice East Barn Surgery The Beggarwood Surgery Wellington Practice (Aldershot CFH) Rahman Dr Simon Fraser & Dr Laura Edwards July 2010 J82015 J82027 J82030 J82039 J82042 J82046 J82049 J82052 J82058 J82061 J82065 J82066 J82067 J82069 J82077 J82079 J82094 J82096 J82099 J82110 J82120 J82123 J82125 J82131 J82135 J82136 J82138 J82142 J82144 J82150 J82157 J82167 J82178 J82181 J82184 J82195 J82197 J82206 J82218 J82219 J82220 J82625 J82628 J82630 J82639 J82647 J82688 J82198 GU14 8QB GU30 7AQ GU11 1AY BH24 1JY GU35 8LH RG25 3DU GU17 0DB GU46 7LS GU34 5EW RG29 1JY RG22 6RL GU11 3RB GU14 7JN RG22 4EH RG24 9DT RG26 5BH RG26 4ER RG24 9DS GU52 7US GU51 4PE GU14 7AW RG21 8SU GU14 0HQ SP6 1RS GU51 4JX GU34 1RJ RG27 8QJ GU12 4DN RG21 7AN BH24 1SD GU34 2QX GU33 7AD GU11 1SD GU14 8UE GU35 0BS GU14 0NA GU10 5LP GU46 6FE RG24 8ND GU35 0AX RG24 9RG GU34 5HG GU10 5RF GU14 6DH RG20 5QX RG24 8TF RG22 4AQ GU11 1AY 100 Appendix 2 - Data requested Practice data At practice level: Total registered practice population Numbers of diabetics Type of diabetes – I or II Proportion achieving QOF HbA1c target Then, of those diabetics: DOB or Age Gender Ethnicity Preferred language (Completeness unlikely) Postcode First diagnosis date Last retinal screening date Presence of diabetic retinopathy (and whether background/proliferative) and date of diagnosis of that retinopathy Whether had laser treatment for retinopathy Whether registered blind/partially sighted Measure of diabetes control (e.g. achieved QOF HbA1C target) Likelihood of attending screening by: • gender • ethnic group • language preference • postcode • last retinal screening date and presence of retinopathy Of those blind/partially sighted: Including discrimination of which came first, diabetes or visual impairment Hampshire Health Record data GP practice code PBC group name PCT name DOB Age (or age category) Gender Ethnicity Type of diabetes – I or II First diagnosis date Total retinal screenings, first and last ret screening dates Presence of diabetic retinopathy Whether had laser treatment Whether registered blind/partially sighted Measure of diabetes control (e.g. QOF HbA1C target) Lower super output area Deprivation quintile Language preference (where available) DRS Programme Data Dr Simon Fraser & Dr Laura Edwards July 2010 101 General Demography Access Uptake Outcomes Dr Simon Fraser & Dr Laura Edwards July 2010 Numbers of patients registered System issues e.g. Care pathway mapping, Communication issues Identifier Postcode GP Practice PCT name DOB/Age Gender Ethnicity Practices visited by vans Locations of cameras Facilities e.g. disabled access Language / literacy issues Type of diabetes – 1 or 2 Numbers of retinal screenings – esp first and last Non response / DNA Presence of retinopathy or maculopathy Stage of retinopathy + date of first diagnosis Referral for further assessment Laser treatment Visual impairment Under ophthalmology care Referrals for assessment – targets etc 102 Appendix 3 – questionnaire Diabetic Retinopathy Screening Questionnaire The purpose of this questionnaire is to help us find out what people think about the Diabetic Retinopathy Screening Service, which tests for eye problems in people with diabetes. We are trying to improve the service, so finding out about your experience is very helpful. This questionnaire is anonymous; please do not give name or address, thank you To answer questions please tick boxes that apply. How long have you had diabetes? (please tick) 0-5 years 6-10 years 11-15 years Since birth 20-25 years What kind of diabetes do you have? Diet controlled Tablet controlled Insulin controlled Have you had yearly eye screening / testing? Yes No If Yes, where: Optician Eye screening van Diabetic Resource Centre Hospital Other: (please specify) ………………………………………………………………. ……………………………………………………………………………………………... Do you know why eye tests are done in diabetes? Yes No Do you receive a letter once a year letter inviting you for diabetic retinal screening (eye testing for diabetes)? Yes No Did you find your appointment easy to attend? Yes No (if no, please explain) ……………………………………………………………. ……………………………………………………………………………………………... ……………………………………………………………………………………………... Dr Simon Fraser & Dr Laura Edwards July 2010 103 Did you experience any difficulties with any aspect of the service? E.g. (please tick all that apply) Appointment date / time Changing your appointment Screening centre location Transport to / from Other Please explain: …………………………………………………………………………... ……………………………………………………………………………………………… ……………………………………………………………………………………………… ……………………………………………………………………………………………… Were there any problems with the screening facilities (e.g. ease of access etc)? Yes No If Yes, what was the problem? ……………………………………………………………………………………………... ……………………………………………………………………………………………... ……………………………………………………………………………………………... Have you had treatment for eye problems related to diabetes care? Yes No If so, where did you go for this and were there any problems? ……………………………………………………………………………………………... ……………………………………………………………………………………………... ……………………………………………………………………………………………... ……………………………………………………………………………………………... ……………………………………………………………………………………………... ……………………………………………………………………………………………... Are you: Male Female Age: Up to 20 21 – 40 41 - 60 61 – 80 80 + Tick which one of the following categories best describes your ethnic origin: British Indian Caribbean Bangladeshi African Other White Pakistani Other Black White & Black Caribbean Other Asian Chinese White & Black African White & Asian Other Mixed Irish Other (please explain) …………………………………………………………….. Thank you very much for taking the time to complete this Dr Simon Fraser & Dr Laura Edwards July 2010 104 Diabetic Retinopathy Health Equity Audit Descriptive summary of process Total time of project: 6 months (based on 4 days per week) – Feb to July 2010 Scoping Understanding the screening process Book: Screening evidence and practice: Angela Raffle and Muir Gray National retinopathy screening programme website: www.retinalscreening.nhs.uk Other sources of information – discussion with screening leads, ophthalmologists, managers of screening programmes, screeners, diabetologists. Understanding the QA process Documents relating to outcome of 2009 QA process which defined need for HEA Literature review Reading around Health Equity Audit methods, process, examples. Review of local work to date Understanding diabetes, retinopathy and risk factors Previous HEAs of diabetic retinopathy Dimensions of equity Consideration of need to look at data by age, gender, location, ethnicity, language, deprivation, type of diabetes Involving others Screening programmes Meetings with programme managers for each programme, discussion with screeners Involvement of PH screening leads Establishing a steering group – monthly meetings to follow progress of audit and make recommendations One to one with trainer to report progress on weekly basis GP involvement Laura Edwards (GP Leadership Fellow) LMC involvement to request data from practices. Met with LMC team to discuss. Diabetologists and ophthalmologists Early discussion with both hospital and community-based diabetes specialists to identify issues Discussion with clinical lead of SHIOW screening programme to set priorities Discussion with other ophthalmologists to gain their perspectives Information specialists Information specialists advising on identification of data sources, extraction of data from practices, HHR and QMAS Collation of data and assistance with analysis and mapping PPI Involving PPI experts in PCT to devise questionnaire Involvement of service users to refine and distribute questionnaire Discussion with individual patients in GP context and at events Identifying data sources Screening programmes Southampton, Hampshire and Isle of Wight Programme Portsmouth and South East Hampshire Programme North Hampshire Programme (based in Salisbury) Obtaining data via the programme managers Hampshire Health Record This involved identifying the variables to be considered, discussion with Hugh Sanderson to discuss feasibility, and formal application process to extract data for those practices submitting to the HHR Practices Data was needed at practice and patient levels to properly understand equity issues. Dr Simon Fraser & Dr Laura Edwards July 2010 105 This was achieved through MiQuest searches for Southampton, Isle of Wight and Portsmouth practices. It was agreed that Hampshire practices’ data would be requested if the practice did not contribute to the HHR. QMAS/QOF data Obtained from PCTs and from the NHS information centre on line. Service user opinion A questionnaire was designed and piloted to garner patient opinion on retinopathy screening services and given out at appropriate events. Hospital data The possibility of extracting data on outcomes for those people referred from the screening programme was explored Extracting data The process for arranging to extract data from practices was the most time consuming and complex. It involved meetings with the Primary Care data managers in each locality to agree Miquests search terms, Read codes and acceptability / timing of requesting data. It also involved meeting and negotiation with the LMC to agree the process and acceptability of requesting patient – level data. One key issue was the extraction of postcode data to enable a deprivation ranking to be attributed to each patient. This required particular discussion because of the potential for patient identifiability. It was agreed that postcodes would be transferred to LSOA in order to preserve non-identifiability of data. A letter was drafted to GP practices that outlined the need for the data, the support of the LMC and the screening programmes and gave information about information governance issues. Practices returned the spreadsheets containing practice data via nhs.net. The data was then converted to a useable Excel format and stored on a secure server at the PCT. Assistance from the data analysts allowed transfer to larger spreadsheets for analysis. Data extraction from the screening programmes was also problematic due to the poor search function of the screening programme software (a problem recognised at a national level). This meant that data was slow to be sent, in varying formats, and containing different definitions from each screening programme, making comparisons difficult. These data extraction issues caused significant delays for the project and should form the first thing to be done if the process were to be repeated. Data analysis Data analysis was done by the dimensions of equity approved by the steering group. Grouped according to Provision, Access, Uptake and Outcomes. Methods – used Access and Excel for analysis and chart design. Mapping conducted by information specialists on postcode data. Feedback Written reports were provided for the project as a whole and for each screening programme Presentations made at screening board meetings Recommendations made to the screening programmes Dr Simon Fraser StR Public Health NHS Southampton City Dr Simon Fraser & Dr Laura Edwards July 2010 106