How effective is a peer led education/selfmanagement programme in improving medication adherence in individuals with a chronic (long term) condition Alex Johnston 1 Introduction As the population ages and our lifestyles and habits change, an increasing number of people are living with long term conditions. In the UK approximately two thirds of all healthcare resources are spent supporting the estimated 17 million adults living with chronic diseases such as diabetes, asthma, heart failure, arthritis, dementia or depression (Department of Health, 2004). However, since eighty to ninety per cent of all care for people with a chronic disease is undertaken by patients themselves and their families, it is important to recognize that patients’ with chronic disease need not be ‘mere recipients of care’. They can become key decision-makers in the treatment process (Department of Health, 2001) Supporting self-management involves educating people to actively manage their condition and adopt and maintain behaviours that can delay disease development or progression. It has been shown to help maintain and improve patients’ behaviour, health status, lower health care utilisation and improve communication between patient and health providers (Lorig et al, 1999; Fu et al 2003). However, it is not surprising that many find it difficult to adhere to the recommended treatment plans when faced with a complex range of lifestyle modifications sometimes, without necessarily noticing any tangible effects (Gatchel et al 2002) Non adherence to treatment has significant effects on treatment outcomes often leading to increased resource utilisation, more frequent hospital appointments and diagnostic tests, increases in doses or changes in medications and risk to the patients if subsequent surgical intervention is required (Gray et al, 2010). Therefore with limited resources coupled with the escalating costs of dealing with ever more complex conditions lay or peer led self management programmes are becoming an increasingly important strategy in healthcare environments. Peer led education can differ from professionally led education in that the peer leader often has experiential knowledge based on a sharing of similar life experiences (Dennis et al, 2003). The format may be more informal than education from a health professional and programmes for minority ethnic groups may offer a more culturally adapted format reflecting specific needs (Foster et al 2008). A number of national peer led chronic disease programmes have been developed in response to the pioneering work of Kate Lorig and her 2 colleagues in North America. Notably, the UK’s Expert Patient’s Programme (EPP) modeled on the Stanford Chronic Disease Self Management Program (CDSMP) (Department of Health 2001). Although peer led self-management programmes have the potential to enhance participants’ abilities to cope with illness it is not clear which are the most important features of an education programme (Bury, et al 2005). For example, outcomes may be dependent on the duration, format, content or even context of the self management training (Foster et al 2008). Whilst peer support may be an element in many peer led self management programmes this review will only be addressing interventions that include an educational component and the self management of disease. The less formalised peer support interventions which involve contact with an individual or group of peers offering information sharing and exchange, social support and sharing of experiences will not be included. Therefore the aim of this rapid review is to better understand the strengths and limitations of a peer led education/self-management programme in improving medication adherence in individuals with a chronic (long term) condition. Please note, given the lack of empirical studies on peer led selfmanagement programmes in improving medication adherence in patients with glaucoma this review has expanded its search strategy to include a range of chronic diseases and primary and secondary outcome measures. 3 Search Strategy A thorough search of the literature was performed in order to identify available literature relating to the effect of a peer led education selfmanagement programme in improving medication adherence in individuals with a chronic (long term) condition. Inclusion Criteria Study type Randomised Controlled Trials (RCT) Experimental design Exclusion Criteria Studies that do not focus on peer or lay led education/ selfmanagement intervention Non English studies Participants Adults Outcomes The primary outcome measure was improved adherence, however all studies with various primary and secondary outcome measures were included in order to gain a comprehensive picture of peer led education/self-management programmes. Language of population English Language - 2000 to 2010 Search terms A thorough search of electronic databases and journals was implored using the keywords: Condition Glaucoma Chronic open-angle glaucoma (GOAG) Chronic disease Long term condition 4 Intervention Peer led Peer leader Lay led Lay leader Self management Peer advisors Peer supporter Health educator Patient educator Outcomes Improved adherence Improved compliance Improved concordance Clinical outcomes Improved health status Databases/Resources Searched A literature search of studies published between 2000 and 2012 was performed. Databases and search engines used included: OVID, Medline, AMED, Cochrane Library, Web of Knowledge and Google Scholar. Due to time restraints only electronic journals were appraised. Ancestral searching of reference lists to identify all relevant empirical studies also took place. All the included studies were published in English. Critical Appraisal Ten studies were identified for appraisal: Comellas et al (2010); Jerant et al (2009); Cade et al (2009); Lorig et al (2008); Baksi et al (2008); Kennedy et al (2006); Barlow et al (2005); Griffiths et al (2005); Fu et al (2004); Hunkeler et al (2000) (Appendix 1). 5 Study purpose These studies all shared a common purpose to examine if a peer led education/self-management programme improved medication adherence in individuals with a chronic (long term) condition. However, the studies were delivered in different settings and used multifaceted interventions. Hunkler (2000) evaluated the efficacy of two augmentations of antidepressant drug treatment with and without peer support. Fu (2003) investigated the effectiveness of the Shanghai Chronic Disease Self Management Program (CDSMP) in increasing self managing behaviours, maintaining and improving health status and decreasing health service utilization. Griffiths (2005) evaluated how a culturally adapted CDSMP may improve self-efficacy and self care behaviour in Bangladashi patients. Barlow (2005) reviewed whether changes in self efficacy, cognitive symptom management, communication with physician, fatigue, anxiousness and depressed mood were maintained over a twelve month period. Kennedy (2006) investigated if the EPP promoted changes in self efficacy beliefs, self care behaviours, health status and decreased health service utilization. Baski (2008) compared the effectiveness and acceptability of peer advisors with specialist health professionals in delivering a self management programme for people with diabetes. Lorig (2008) evaluated a Spanish diabetes self management programme with and with out automated telephone reinforcement. Cade (2009) assessed if the EPP adapted to people with Type 2 diabetes promoted healthy eating to improve glycaemic control. Jerant (2009) compared usual care with either a telecare or one to one home delivered variant of the CDSMP in improving self efficacy and health status. Comellas (2010) evaluated a peer led self management support programme in English and Spanish in improving medication adherence, problem solving and goal setting, increased physical activity and healthier eating. 6 Literature Review All ten studies provided detailed discussions on the background to each study/paper, succeeded in aggregating relevant information (previous research etc.) and commented on the clinical importance of the subject. Design In all but one study the individual participants were randomized. (Barlow 2005 was 12 month follow-up of a sample of 171 participants who had attended a UK CDSMP). Six of the studies compared a peer-led intervention to usual care; Cade (2009) offered a diabetes specific EPP or individual one off appointment with a dietitian; Baksi (2008) included a comparison with professionally-led care; Hunkeler (2000) augmented nurse Telehealth care with peer support. Comellas (2010) was described as a pilot. Chronic conditions Those evaluating the CDSMP or EPP recruited participants with a wide range of conditions including hypertension, heart disease, chronic lung disease, cancer, arthritis, stroke, diabetes, chronic pain, chronic back pain, chronic fatigue, mental health, haemophilla, endometriosis, liver disease, asthma and neurological conditions. The remaining interventions were all designed for specific conditions i.e. depression and diabetes (Hunkeler 2000, Jerant 2009). Settings Six studies were conducted in the UK (Cade 2009, Baksi 2008, Kennedy 2006, Barlow 2005, Griffiths 2005, Hunkeler 2000). Three studies took place in North America (Comellas 2010, Jerant 2009, Lorig 2008) and one in China (Fu 2003). Six of the studies took place in the community (Comellas 2010, Lorig 2008, Griffiths 2005, Barlow 2005, Kennedy 2006, Fu 2003) and four in a primary care setting (Cade 2009, Jerant 2009, Baksi 2008 Hunkeler 2000). Sample sizes A total of 3951participants were recruited across all the studies, with individual studies having between 17 and 954 participants. The sample was predominantly female. 7 According to Aveyard (2007) researchers should demonstrate how they determined the sample size, also known as power calculation (Greenhalgh 1997; Polgar and Thomas 2000) and should be clearly documented in the paper Lorig (2008), Hunkeler (2000) and Barlow (2005) failed to do so. All studies provided information regarding participant recruitment and inclusion and exclusion criteria and referenced previously published study methodology. Ethical Approval All authors, provided details on obtaining ethical approval from committees and informed consent from participants, thus reassuring the reader that research was conducted in accordance with accepted community principles. 8 Follow-up and exclusions Nine studies reported information on follow-up rates. 6 month (Baksi 2008, Kennedy 2006, Fu 2003) 12 month Barlow (2005) 6 and 12 month Cade (2009) 6 and 18 month Lorig (2008) 6 weeks, 6 and 12 month Jerant (2009) 6 weeks and 6 month Hunkeler (2000) 4 month Griffiths (2005) Comellas (2010) did not report on a follow up Intervention The 10 included studies were grouped by type of intervention, as follows: Diabetes Self Management Program (SDSMP) 2 studies (Lorig 2008; Baksi 2008) Chronic Disease Self-Management Program (CDSMP) or its anglicised variation The Expert Patient Programme (EPP) 6 studies (Fu 2003; Griffiths 2005; Barlow 2005; Kennedy 2006; Jerant 2009; Cade 2009) Other disease-specific peer/lay educational interventions: 2 studies (Hunkleler 2000; Comellas 2009) 9 Brief summary of the interventions The ASMP, CDSMP and its anglicised version, the EPP, typically consist of a structured course of 6 (originally seven) weekly sessions each lasting approximately 2 hours and led by one, or more usually two, trained and accredited lay facilitators. The sessions cover goal setting and problem solving, lifestyle changes around diet, exercise, and sleep, identifying resources, symptom management, dealing with anger, fear and frustration and communication with health professionals. The lay facilitator acts as a positive role model. Participants are also given an educational manual or booklet (Foster et al 2008) The interventions demonstrated by the third group varied in structure: Hunkeler (2000), provided telehealth care, emotional support and focused behavioural interventions in ten 6-minute calls during 4 months by primary care nurses plus peer support offering telephone and in-person supportive contacts by trained health plan members recovered from depression. Based on the American Diabetes Association programme Comellas (2009) offered a community based, self management support programme consisting of 5 consecutive sessions, lasting 2 hours. (Below is a table consisting of 2 columns and eleven rows including a header row.) Study Comellas 2010 Jerant 2009 Cade 2009 Baksi 2008 Lorig 2008 Kennedy 2006 Outcome measures Improved diabetes self management behaviours i.e. increased physical activity, healthier eating, medication adherence, problem solving and goal setting Self efficacy, improved health status, medication adherence, functional ability and depressive symptoms Change in glycated haemoglobin HbA1 Changes in knowledge relating to diabetes, nutrition, exercise, monitoring and medications; secondary outcomes changes in glycated haemoglobin and the Diabetes Care Profile Self efficacy, improved health status, health behaviours, decreased health service utilization Self efficacy, improved health status, health behaviours, decreased health service utilisation 10 Barlow 2005 Griffiths 2005 Fu 2003 Hunkeler 2000 Physical functioning, self efficacy, behavioural and cognitive techniques, pain and fatigue, psychological well being Self efficacy, self care behaviour, communication with physician, medication adherence, health status, depression, anxiety, pain, fatigue, shortness of breath, healthcare use Self efficacy, improved health status, health behaviours, decreased health service utilisation Greater reduction in depressive symptoms, greater improvement in functioning and treatment satisfaction; improved medication adherence 11 Results Medication adherence The five studies that included this as an outcome measure found no significant improvements in medication adherence (Hunkeler 2000, Griffiths 2008, Baksi 2008, Jerant 2009 and Comellas 2010). Self-efficacy (confidence) to manage symptoms The following studies report considerably greater self efficacy at followup: Griffiths 2005 (P = 0.001), Jerant 2009 (P = .001), Fu 2003 (P = 0.001), Lorig 2008 (P<0.001), Barlow 2005, (P = 0.58), Kennedy 2007 (P = 0.000). Self management behaviour (exercise and practice of cognitive symptom management which refers to a six-item measurement instrument which seeks to determine the frequency of trying various cognitive strategies such as relaxation and visualization (Lorig 1996). Comellas 2010 (P = .04), Fu 2003 (P = 0.005) and Baksi 2008 (P = 0.002) report that significant improvements were found in physical activity and nutrition activities. Health Status (e.g. energy, depression, anxiety, pain, fatigue, shortness of breath) Fu 2003 (P = <0.05) demonstrated significant improvements as did Kennedy 2006 (P = 0.004) whilst Griffiths 2005 (P = 0.751) reported marginal improvements. Hunkeler 2000 and Jerant 2009 both report no improvement in primary outcomes. Communication and health care use Both Fu 2003 (P = 0.04) and Lorig 2008 (P = <0.05) reported fewer hospital visits whilst Griffiths 2005 (P<0.05), Barlow 2005 (P = 0.732), Kennedy 2006 (P = .956) and Jerant 2009 found there were no significant differences between groups. Griffiths 2005 also reported no improvements in communication whilst Lorig 2008 and Kennedy 2006 reported significant improvements in communication. 12 Health care costs The actual or estimated costs of delivering the programme per participant were reported in a four studies: (Lorig 2008) US$250, (Kennedy, 2006) £250, (Griffiths 2005) £123, (Fu 2003) Yuan 82.66 Harms None of the studies reported that they had received any complaints. No adverse outcomes were reported in any of the included studies. 13 Discussion This review identified eight RCTs, one follow up and one pilot study examining the effectiveness of structured, peer-led education/selfmanagement interventions for individuals with chronic conditions in 3931 participants. Most were based on a common theoretical framework but the studies included have variable aims and researchers have utilised a range of different outcomes making direct comparison between studies difficult. None of the studies used improvements in adherence as a primary outcome. Also, the paucity of studies which examined outcomes beyond twelve months, (Lorig, 2008 was the exception) make it difficult to speculate whether benefits would be maintained long term, or indeed if there are benefits which only become apparent over time. Results from the included studies suggest that peer led education/selfmanagement programmes may lead to short-term improvements in participants’ self-efficacy (in essence their confidence to change behaviour) and self care behaviour both of which are associated with better health outcomes (Newman, 2004). Griffiths (2005) tested a culturally adapted CDSMP and reported short term improvements in self efficacy in Bangladeshi patients, suggesting that it may be useful for ethnic minorities. However, the changes in self efficacy are generally modest and it is unclear how much patients value improvements in self efficacy when compared to a reduction in symptoms or a gain in health related quality of life. Findings from the included studies indicate that a peer led education/self-management programme does not improve medication adherence in individuals with a chronic (long term) condition. Synthesis of the three included studies which considered telehealth care suggests that peer led education/self-management programmes did not improve primary outcomes. Lorig’s (2008) automated telephone intervention did not enhance outcomes nor did Jerant’s (2009) or Hunkeler’s (2000) ‘in-person’ contact. Although very limited, there is evidence that suggests peer led interventions are as effective as professionally led ones (see Cochrane review Foster et al, 2008) therefore a comparison between Hunkeler’s (2000) peer and nurse led intervention may have been worthwhile. From the evidence provided it is difficult to infer if disease-specific peer led interventions are any more or less effective than generic 14 interventions. Nor it is possible to determine what components or aspects of the interventions are the most effective. Whilst there were small improvements in fatigue, energy, physical activity and general well being, the improvements were not satistically significant. 15 Conclusion Overall there is insufficient evidence at present to justify widespread implementation of a peer led education/self management programme, if the sole aim is to improve medication adherence in individuals with a chronic condition such as glaucoma. However, it is important to recognise that there is a large amount of research on interventions for improving adherence to glaucoma therapy. Also, due to time restrictions and the restrictive inclusion criteria (the use of peer led selfmanagement programmes) a substantial body of relevant evidence has not been discussed in this report. 16 References Aveyard H (2007) Doing a Literature Review in Health and Social Care. A Practical Guide. England: Open University Press. 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