Version 220108
NHS GRAMPIAN
SCREENING PROGRAMMES
ANNUAL REPORT
2005/2006
1
Contents
Section One
Section Two
Introduction
1.1 Aim of screening
1.2 Overview of the screening programmes
Individual Programme’s Performance
2.1 Cervix
2.2 Breast
2.3 Bowel
2.4 Diabetic Retinopathy
2.5 Antenatal
2.5.1 Infectious Diseases
2.5.2 Down’s Syndrome and Neural Tube Defect
2.6 Neonatal Screening
2.6.1 Guthrie screening
2.6.2 Universal Neonatal Hearing Screening
Section Three
Future developments
3.1 Screening for abdominal aortic aneurysm
3.2 Screening for MCAAD
Section Four
Conclusions
2
SECTION ONE
Introduction
This is the 2005/2006 annual review of the screening programmes offered to the population of
Grampian. These include screening during pregnancy, screening babies after birth, diabetic
retinopathy screening and cancer screening programmes. The report brings together information on
the performance, quality and workload of the different screening programmes provided in Grampian.
Although each of these programmes varies considerably from one another in terms of how they are
organised and delivered, they have significant aspects in common such as uptake rates and quality
assurance.
Significant progress has been made since the first recognised screening programme, cervical
screening, was started over 40 years ago in Grampian. In that time there have been continual
improvements in coordination and organisation of the programmes as well as advancements in
technology such as the introduction of liquid based cytology for cervical screening. IT systems
continue to develop especially in the breast and cervical screening programmes and new screening
programmes for bowel cancer and neonatal hearing screening are now available in Grampian.
Comments on this report would be welcome and should be sent to the NHS Grampian Screening
Coordinator, Dr Susan Macphee. The email address is: susan.macphee@nhs.net.
1.1 Aim of screening
The purpose of screening is to identify, by the application of a suitable test to apparently healthy
individuals, those who may have a disease and differentiate them from those who probably do not.
It is not designed to make a diagnosis. That is achieved by offering further tests to individuals whose
initial screen suggests they are at risk of having or developing the disease in question e.g. offering
colposcopy after an abnormal smear.
By being able to provide treatment early in this way the aim is to reduce significantly the number of
people dying from the condition or prevent significant ill health such as severe handicap from
developing in due course. For example, the blood tests performed on newborn babies which are
designed to detect signs of congenital hypothyroidism and phenylketonuria mean that, if found, the
baby can be started on life long treatment which will prevent them developing severe learning
disabilities as they grow up.
1.2 Overview of the screening programmes
In the cervical screening programme coverage of over 80% was maintained from the early days of
the computerised call/recall system. However, more recently there has been a slow but consistent
decline in uptake with the result that for the calendar year, 2006, uptake for eligible women having a
smear in the last 3.5 years fell below 80% to 76.75%. The proportion of unsatisfactory cervical
smears has, on the other hand, remained stable, at less than 2%, since the introduction of the new
method of smear taking and preparation known as liquid based cytology. The new computerised
call/recall system for cervical smears reporting, SCCRS, is live from May 2007.
The North East of Scotland Breast Screening Programme continues to provide a well organized,
high quality service to women in Grampian. Coverage has been consistently over 80% since the
programme began in 1990. Age extension from 64 to 70 years for those invited routinely was
successfully implemented in November 2005. For the year 2006, the breast cancer detection targets
have been met but the time from diagnosis to surgery has been a challenge for the symptomatic
breast cancer service.
3
Screening for bowel cancer has been successfully implemented in Grampian. Available statistics
from the pilot studies in Grampian, Tayside and Fife suggest that bowel cancer screening is feasible
and will, in due course, be effective in reducing mortality from this common cancer.
The Diabetic Retinopathy Screening Programme in Grampian continues to experience a high
volume of referrals for screening. This reflects the substantial and ongoing increase in the number
of people in Grampian being diagnosed with diabetes. This in turn is occurring as Grampian, in
common with the rest of the country, experiences a significant increase in the proportion of the adult
population who are overweight or obese.
Uptake of screening for infectious diseases in pregnancy in Grampian has remained over 90%.
However, a small proportion of pregnant women were found to be susceptible to rubella infection
during pregnancy.
Current data suggest a small but worrying number of parents are refusing to give their consent for
bloodspot screening for their newborn infants. However, the Newborn Hearing Screening
Programme has been successfully rolled out in Grampian, ensuring that every parent of a newborn
child is offered a screen for his or her baby’s hearing.
SECTION TWO
2.1
Cervical screening
2.1.1 Background
The aim of the cervical screening programme is to reduce the incidence of and morbidity and
mortality from invasive cervical cancer. This is achieved by the regular screening of all women aged
between 20 to 60 years to detect possible precancerous abnormalities in cells, called dyskaryosis,
which may develop into cervical cancer if not treated. Eligible women are invited for screening every
three years.
2.1.2 Scottish Cervical Call Recall System Project (SCCRS)
In Grampian, trained nursing and medical staff, mainly based in GP practices, take cervical smears.
A small number of smears are also taken at family planning clinics. In the past, the Practitioner
Services Division was responsible for running the call/recall system for the majority of practices in
Grampian. This system, known as CCS, invited women who had never had a smear or who were
last screened three years previously to have a smear test. A few practices ran their own in-house
call/recall system.
The success of the screening programme depends on achieving a high level of coverage of the
eligible population. Women who do not attend for their smear or default from repeat smears,
colposcopy or follow-up should be given further opportunities to attend, as they may be at higher
risk of developing cervical carcinoma. The term 'failsafe' includes all the arrangements to ensure
this happens.
Following the report of the quality improvement review published in June 2000, the Scottish Cervical
Call-Recall System, SCCRS, was developed to provide up-to-date software technology and to have
everyone in Scotland using the same system. The SCCRS application therefore replaces the CallRecall element of clinical systems including GPASS and other GP Systems, and the cervical
element of laboratory systems used throughout NHS Scotland. It also replaces the two centrally
operated Call Recall systems i.e. the Cervical Cytology System (CCS), which operates in Grampian
and most other boards in Scotland, and the Online Cervical Cytology Uptake Recall Systems
(OCCURS) which operates in Tayside, Fife and Forth Valley. SCCRS provides General Practice
with the opportunity to review electronic lists of eligible women before the invitations are sent out.
The work of sending out the invitations with the appropriate leaflets is done centrally but the costs
are held at NHS Board level.
4
The main objective of SCCRS is to deliver a standardised national system to ensure delivery of the
same cervical screening service to all women in Scotland irrespective of their location. SCCRS goes
live in May 2007. The implementation and post implementation processes will be highlighted in a
subsequent screening report.
2.1.3 National Colposcopy Clinical Information & Audit System (NCCIAS)
In November 2003, NHS Quality Improvement Scotland reviewed cervical screening services across
Scotland. The national overview highlighted the difficulties in monitoring performance against
recognised standards due to the lack of data collection and recommended that data collection and
monitoring systems should be established in colposcopy. One of the key recommendations was that
funding should be secured to develop a national colposcopy information system with committed
technical, administrative and analytical support to collect the BSCCP minimum colposcopy dataset
in order to monitor colposcopy services.
The system was piloted in the Aberdeen Colposcopy Clinic from August 2005 and went live at this
site on 1st December 2005. All regions in Scotland will have had the system installed and training
completed by the summer of 2006. NCCIAS has enabled colposcopists to access their own
colposcopy data and to anonymise the aggregated data for the whole of Scotland for comparisons.
This has supported local audit, bench marking, surveillance and planning of services.
2.1.4 Current statistics
As at 31st March 2006, 81.4% of eligible women in Grampian had been screened for cervical
cancer in the previous 3.5 years compared to 83.7% in 1996. Similarly, the 5.5-year uptake rate was
85.9% in 2005/06 compared to 88.8% in 1996. (Figures 1 & 2) Similarly declining trends have been
identified across the different health board areas in Scotland.
These trends have also been identified within the different Community Health Partnership (CHP)
areas in Grampian. This is especially marked in Aberdeen City, where the percentage of practices
achieving an uptake rate of greater than 80% dropped from 53% in 2001 to 25% in 2006. (Table1)
Figure 1: 3.5 year uptake of cervical screening in Scotland and Grampian:
1 Jan 1996 – 31 March 2006
100
80
60
40
20
0
1996
1997/1998
1998/1999
1999/2000
2000/2001
Scotland
2001/2002
2002/2003
2003/2004
2004/2005
2005/2006
Grampian
Source ISD
5
Figure 2: 5.5-year uptake of cervical screening in Scotland and Grampian:
1 Jan 1996 – 31 March 2006
100
80
60
40
20
0
1996
1997/1998
1998/1999
1999/2000
2000/2001
2001/2002
Scotland
2002/2003
2003/2004
2004/2005
2005/2006
Grampian
Source: ISD
Table 1: Number of Practices by local Authority Area achieving >80%
(3.5 –year uptake rate)
2001
Local
Authority
Area
No of
practices
2006
No (%)
achieving >80%
No of
practices
No (%)
achieving >80%
City
34
18 (53)
32
8 (25)
A’shire
36
34 (94)
36
29 (81)
Moray
16
14 (88)
16
8 (50)
Number of smears examined
There has been a gradual fall in the number of smears examined in the laboratory over the last 5
years. (Table 2) This is in part due to a general decline in the uptake rate for cervical screening
across Grampian as well as the fact that the new method of smear taking and preparation, liquidbased cytology, has substantially reduced the need for repeat smears.
Table 2: Number of smear examined: Scotland and Grampian 2000/01-2005/06
Year
Scotland
Grampian
2000/01
457 774
53 883
2001/02
471 721
51 495
2002/03
439 678
45 760
2003/04
429 522
49 995
2004/05
406 305
45 791
2005/06
410241
45 113
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Inadequate Smears
The adequacy and quality of cervical smears are important to women and affects coverage
statistics. In 2003/2004, there was a significant fall in the percentage of tests which were reported
as inadequate. This followed the introduction of the new Liquid-based Cytology (LBC) method of
smear taking and preparation in the previous year. The full impact of the LBC method was not seen
until 2004/05 because in 2003/04 a significant proportion of conventional smears were still being
processed in the laboratory. Although the 2005/06 data suggest a slight increase in the percentage
of tests reported as inadequate compared with 2004/05, it remains significantly lower than the level
of reporting that was the accepted standard using conventional smear taking and preparation
methods. (Figure 3)
Figure 3: Percentage of unsatisfactory smears - women aged 20-60, 2000/012005/06 (2nd Quarter)
10
9
8
7
6
5
4
3
2
1
0
2000/01
2001/02
2002/03
2003/04
Grampian
2004/05
2005/06
Scotland
Source ISD
Results of cervical smears
Smear results for mild, moderate and severe dyskaryosis are shown in Table 3. In 2004/05 and
2005/06, over 90% of smear results were negative. There were more cases of mild, moderate,
severe dyskaryosis and severe dyskaryosis invasive in 2005/06 than in the previous year.
Table 3: Results of cervical smears Grampian: 2004/05 and 2005/06
2005/2006
2004/2005
Total
satisfactory
smear
44364
45097
Negative
smear
40739 (92%)
41966 (93%)
Borderline
2070 (4.7%)
2151 (5.1%)
Mild
dyskaryosis
773 (1.70%)
513 (1.1%)
Moderate
Dyskaryosis
383 (0.90%)
258 (0.6%)
368 (0.83%)
188 (0.4%)
13 (0.03)
5 (0.01%)
14 (0.03)
15 (0.03%)
Severe
Dyskaryosis
Severe
Dyskaryosis
Invasive
Glandular
abnormality
Source ISD
7
Incidence of cancer of the cervix: Scotland and Grampian 2001-2004
Standardising rates of occurrence of disease is a useful, shorthand way of enabling a comparison to
be made between the local experience of disease and the national or international experience. The
way the figures are calculated usually takes out the effect of differences in the age and sex structure
of the populations being compared and means that the national figure is always 100. Therefore, if
the local rate is less than 100 then there is less disease than compared to nationally. Conversely, if
the local figure is greater than 100 then there is more disease occurring in the local area than in the
comparison area.
The standardised incidence ratio (SIR) of cervical cancer in Grampian in 2004 was 63.8 compared
to that reported in 2001, which was 83.4, indicating a slight reduction in incidence of cervical cancer
in Grampian over the four-year period. This was 36.2% and 16.6% less than the Scottish average in
2004 and 2001 respectively. Comparing the SIR across the Scottish boards in 2004 Grampian had
the second lowest incidence ratio (Figure 4).
Similarly, in 2001, the age standardised incidence rate of cervical cancer in Grampian was 9.1 per
100,000 person years at risk (European population) compared to 6.2 per 100,000 person years at
risk in 2004, suggesting a substantial reduction in the incidence of cervical cancer which may be
attributed to a number of factors including screening, changes in lifestyle and the use of barrier
methods of contraception. However, there is very little evidence available to show the relative
contribution made by each of these factors although it is likely that cervical screening which has
been available for many years and for which uptake is high is likely to have had the biggest single
influence.
Figure 4: Standardised Incidence Ratio for cervical cancer by Health Board Area,
2004
200
180
Standardised Incidence Ratio
160
140
120
100
80
60
40
20
0
Dumfries
and
Galloway
Highland
Tayside
Argyll and
Clyde
Forth
Valley
Ayrshire
and Arran
Greater
Glasgow
Lothian
Lanarkshire
Fife
Borders
Grampian
Source ISD
Mortality from carcinoma of cervix: Scotland and Grampian 2001-2005
Mortality from cervical cancer has been on the decline in Grampian for a number of years. In 2001,
the Standardised Mortality Ratio, SMR, for cervical cancer in Grampian was 89.2 compared to 70.9
in 2005. This suggests that Grampian had 10.8% and 29.1% less mortality than Scotland in 2001
and 2005 respectively. In 2005, SMR data across Scotland showed that Grampian had the lowest
SMR in that year. (Figure 5) However, the number of deaths, especially in the smaller boards, is
small and it is not possible to be confident that this is a true difference.
8
Figure 5: Standardised Mortality Ratio for cervical cancer by Health Board Area, 2005
160.0
140.0
120.0
SMR
100.0
80.0
60.0
40.0
20.0
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2.2
Breast cancer
2.2.1 Background
Breast cancer is a major cause of mortality among women in Scotland and the United Kingdom. Its
incidence increases markedly with age and it is especially common in women over 50. It is
estimated that in the UK about 16,000 women die annually from the disease. According to the
World Health Organisation (WHO) breast screening in women aged 50-69 years by mammography
reduces mortality from breast cancer by 35%. This means that out of every 500 women screened,
one life will be saved.1Latest research in England shows that the NHS Breast Screening Programme
is now saving 1,400 lives every year2.
The breast-screening programme aims to reduce breast cancer mortality among the target group by
detecting breast cancers when they are very small. This will, in turn, contribute to the achievement
of the national target of reducing mortality from all cancers in people under 75 by 20% by the year
2010 (baseline year 1995). Unlike cervical screening which aims to reduce cervical cancer
incidence (the number of new cases) and mortality by detecting and treating pre-cancerous
conditions, breast screening has no long-term effect on breast cancer incidence. A second objective
of breast screening is that early detection leads to a reduction in the need for radical treatment.
The Scottish Breast Screening Programme (SBSP) became operational in 1988 and by 1991
national coverage was attained. The North East Scotland Breast Screening Programme which
covers Grampian, Orkney and Shetland was established in 1990. Women resident in Aberdeen and
within an 18-mile radius of the city centre are screened within the static centre at Foresterhill,
Aberdeen. One mobile unit covers the remaining areas of Grampian and travels to Orkney and
Shetland.
Since the Programme was established eligible women aged 50 to 64 years have been invited to
attend for screening by mammography at three yearly intervals. Women aged over 64 years have
been able to self-refer. In 2003/04 the age limit for those invited routinely for breast screening was
increased from 50-64 to 50-70 years. This was to be rolled out across Scotland over a period of 3
years. Having ensured that adequate facilities and sufficient staff were in place to cope with the
increased workload generated, age extension was implemented in the North East Programme in
November 2005.
1 7th Handbook on Cancer Prevention, IARC, Lyons 2002
2 Screening for Breast Cancer in England:
Past and Future, Advisory Committee on Breast Cancer Screening, 2006 (NHSBSP Publication no 61)
9
The screening process and referral
A list of women in the eligible age range is generated from a national computerised system that
operates within each breast-screening centre. This system is linked to the Community Health Index
which is the database of everyone registered with a general practitioner in Scotland. Invitation
letters for screening are sent to eligible women from the centre a few weeks prior to the appointment
date. Women who fail to attend for their appointment are sent a second invitation from the screening
centre encouraging them to make another appointment.
At screening, a specially trained radiographer or assistant practitioner takes an x-ray of the breast.
Two views of each breast are taken at the first screening visit as there is evidence to suggest that
this will improve the detection rate of abnormalities. Two accredited film readers, reading
independently, determine whether the appearance of the breast on the x-ray is normal or not. If
there is a problem with the technical quality of the x-ray such that it cannot be accurately read the
woman is invited back for a repeat mammogram. This is known as a ‘technical recall’.
Further assessment following detection of an abnormality on the screening x-ray is carried out at the
breast screening centre. A number of different methods are available for investigating the
abnormality including further mammography, ultrasound and clinical examination. Image guided fine
needle aspirations (FNA) and/or core biopsies may be undertaken for cytological and histological
assessment. FNA involves the aspiration of cells from a suspicious lesion and aims to distinguish
between a malignant and non-malignant lesion without the need for a biopsy. In the event that a
woman is diagnosed with cancer she is referred to Aberdeen Royal Infirmary for treatment which
might include surgery, chemotherapy, radiotherapy or a combination of these.
2.2.2 Current statistics
In 2005/06, there were 70,216 eligible women in the catchment area (Table 4). It is estimated that
the total population of eligible women in the catchment area will increase to 72,590 in 2007 and to
76,325 by 2010. This represents an increase of almost 9% in the number of women to be invited
and, therefore, in the workload of the programme. This projected increase in the population is being
monitored on an annual basis as data thus far suggest that the likely increase in the female
population for Scotland as a whole maybe closer to 5%. It is, therefore, crucial that the North East
Scotland programme is planned and funded on the basis of the population increase experienced
locally rather than for Scotland as a whole. Future reports will return to this topic.
Table 4: Total eligible female population of the catchment area 2005/2006
Grampian
Orkney
Shetland
64,737
2,779
2,700
Total
70,216
Screening uptake
The uptake of the breast screening programme is the proportion of eligible women invited for
screening for whom a screening test result is recorded. The coverage of the breast screening
programme is the proportion of eligible women who have had a test with a recorded result at least
once in the last 3 years.
In Grampian, breast screening uptake has continued to rise over the last six years (Table 5). For the
screening round, 2005-2006, 17,880 females were invited for screening in Grampian. Of these
14,833 (83%) attended for screening either at the main centre in Aberdeen or on a mobile unit.
Uptake for women attending for screening for the first time (prevalent uptake) i.e. women aged 5052 was 83% compared to uptake
for subsequent screens (incident uptake) i.e. women aged 5364 which was 92.9%. For Scotland as a whole in 2005-06, 122,863 women aged 50-64 attended for
screening out of 158,695 invited giving an uptake rate of 77.4%. Corresponding prevalent and
incident uptake for Scotland were 78.2 and 90.5% respectively.
10
Table 5 Breast screening uptake Grampian and Scotland 2000-2006
2000-2003
2001-2004
2002-2005
2003-2006
Grampian
82.3%
82.5%
82.7%
83%
Scotland
74.0%
74.9%
75.5%
76.2%
Cancer detection
In Grampian, the detection rates for invasive, small invasive and non-invasive cancers exceeded all
the minimum and most of the expected targets. It is important to be cautious when comparing the
following data with the targets. This is because for some of the categories the number of cancers
detected is very small with the result that one cancer more or less has a disproportionate impact on
the rate.
In 2005/2006, for prevalent screens, 24 invasive cancers were detected out of 3373 women
screened giving a rate of 7.1 per 1000. Following subsequent screens, 58 invasive cancers were
detected out of 11,473 women screened giving a rate of 5.1 per 1000. Corresponding detection
rates for the whole of Scotland were 5.4 per 1000 (prevalent) and 4.9 per 1000 (incident).
For small invasive cancers (<15mm size), 10 cases were detected following prevalent screens and
23 cases following incident screens giving rates per 1000 of 3.0 and 2.0 respectively. The incident
detection rate was above the minimum standard of 1.65 but just below the expected target of 2.2.
Corresponding small invasive cancer detection rates for Scotland were 2.7 and 2.4 per 1000
following prevalent and incident screens respectively.
For non-invasive cancers, 16 cases were detected following prevalent screens giving a rate per
1000 of 4.7. For incident screens, 12 cases were detected giving a rate of 1.0 per 1000. This
compares with Scotland figures of 2.5 and 1.2 per 1000 for prevalent and incident screens
respectively.
Referral for further assessment
In 2005-2006, 389 (11.5%) women attending for screening for the first time and 485 (4.2%) of those
re-attending were recalled for further assessment. For those attending for the first time, the recall
rate was higher than the minimum and the expected target of less than 10% and 7% respectively.
For Scotland, the recall rates were 10.4% and 3.7% respectively.
In a small number of cases, a few women with equivocal results are asked to come for repeat
mammography earlier than the standard interval of 3 years. In 2005/06, 0.04% (7) of all women
screened in Grampian were asked to come back for repeat mammography.
Incidence of breast cancer
The data published showing the total number of cancers diagnosed in a given year include both
those detected through the screening programme as well as those detected as a result of causing
symptoms. In 2004 (the most recently available data as at July 2007), the incidence of breast
cancer in Grampian was approximately 9% lower than the rate for Scotland. This is in contrast to
2003 when it was approximately 4% higher than the Scotland average. The range of standardised
incidence ratios reported across all health boards in 2004 was from 65.3 in Ayrshire and Arran to
135.3 in Lothian. (Figure 6)
11
Figure 6: Standardised Incidence ratio of breast cancer by Health Board Area, 2004
160.0
140.0
Standardised Incidence ratio
120.0
100.0
80.0
60.0
40.0
20.0
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Mortality from breast cancer
The number of deaths from breast cancer appears to have fluctuated in recent years but with an
overall downward trend. The Standardised Mortality Ratio, SMR, in 2005 showed that mortality from
breast cancer in Grampian was 17% less than the Scottish rate. SMRs reported across the Scottish
health boards ranged from 154.2 in Western Isles to 62.9 in Orkney. It is again important to point out
that these are based on small numbers and the ratios will fluctuate markedly
Figure 7: Standardised mortality ratio of breast cancer by Health Board Area in
Scotland 2005
180.0
160.0
140.0
120.0
SMR
100.0
80.0
60.0
40.0
20.0
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Quality assurance
The Scottish breast screening programme (SBSP) has a robust quality assurance programme to
ensure that the benefits of screening outweigh any harm. A comprehensive dataset is collected so
that performance can be monitored against the standards set for an effective, high quality screening
service, call-recall, informed choice, further assessment and cancer detection. These standards are
set out in the NHS Quality Improvement Scotland (NHS QIS) clinical standards for breast screening
published in 2002.
In 2006, NHS QIS revisited all breast-screening services across Scotland to monitor these
standards against performance. The review for the North East of Scotland Breast Screening Service
was carried out in June 2006 and showed that the majority of the NHS QIS standards were met.
2.3
Bowel Screening
2.3.1 Background
Bowel cancer is the third most common cancer in the UK and the second leading cause of cancer
deaths with over 16,000 people dying from it each year. In Scotland, the incidence of bowel cancer
is high and it is the third most common cancer among men and women. It is second only to lung
cancer as a cause of mortality in both men and women.
12
The aim of bowel cancer screening is to detect bowel cancer at an early stage (in people with no
symptoms) when treatment is more likely to be effective. Bowel cancer screening can also detect
polyps. These are not cancers, but may develop into cancers over time. They can easily be
removed thus reducing the risk of bowel cancer developing.
The establishment of a Scottish national bowel screening programme was announced in 2006
following a successful pilot in Fife, Grampian and Tayside Health Board areas to assess the
feasibility, acceptability and practicality of a national programme. The pilot, which commenced in
2000, was based on evidence from randomised control trials in England, Denmark and the United
States as well as a Cochrane review that demonstrated that faecal occult blood testing resulted in a
16% decrease in deaths from bowel cancer.
The roll out of the programme across Scotland will run from 2007 to 2009, targeting all eligible
individuals (males and females) aged 50-74 years who are registered with a GP. Local
arrangements will be made for all other eligible individuals who are not registered with a GP to be
sent test kits. The national programme will operate from the Scottish Bowel Screening Centre
(SBoSC) based at King’s Cross in Dundee. The centre consists of a call-recall office, laboratory and
helpline telephone services. Information about eligible participants will be obtained from the
Community Health Index (CHI).
The screening process
All men and women aged between 50 and 74 years will be sent a faecal occult blood test kit to their
home address every two years. The completed kit should be returned to the central laboratory at the
bowel screening centre within 14 days of first use and results of the screening test will be sent
directly from the centre to the participant. Included in each test kit are two standardised information
sheets one explaining how to undertake the screening test while the other explains the benefits and
risks of screening and the significance of both positive and negative screening test results.
In Grampian, individuals who have a positive result will be asked to attend for a pre-colonoscopy
assessment. This will be at either Aberdeen Royal Infirmary, Dr Gray’s Hospital in Elgin or at one of
the peripheral clinics to be established to reduce travelling distances for patients whenever possible.
During the assessment appointment, a specialist nurse will assess the individual’s fitness to
undergo a colonoscopic examination. The significance of a positive faecal occult blood test (FOBT)
is explained alongwith what is involved with the colonoscopic procedure, its risks and the chances of
the examination of the bowel being incomplete. The nurse takes time to answer any queries the
patient may have and tries to address his/her concerns.
Following this assessment, if the patient is fit and meets the criteria set for the programme, he/she
will be given an appointment for colonoscopy. In the few instances when the colonoscopic
examination is incomplete, the patient can be referred for a barium enema.
2.3.2
Current Statistics
The screening process
During the second round of the colorectal screening pilot, between December 2002 and May 2005,
63,288 men and 62,661 women were invited to participate in the screening programme in
Grampian. In Fife, 41,713 men and 43,640 women were sent test kits and in Tayside the totals were
48,358 men and 50,143 women.
The uptake rate was higher in Grampian at 54.3% compared to 53.5% in Tayside and 50.4% in Fife.
Table 6 below demonstrates how the programme has also proved more popular with women than
men with higher uptakes amongst women in all three pilot boards. This is of some concern as men
are at a higher risk of developing bowel cancer and would, therefore, benefit more from participating
in screening.
13
Table 6: Percentage Uptake for males and females in pilot boards: 2002-2005
Males Females
Grampian 49.6% 59.0%
Tayside
49.2% 57.7%
Fife
46.8% 53.9%
In Grampian, there was a downward trend in uptake of screening across the socioeconomic
classes. Uptake was higher in the more affluent areas with 59.6% in the least deprived compared to
34.8% in the most deprived participating (Figure 8). Similar trends were also observed in the other
pilot sites.
Figure 8: Overall uptake of screening in Grampian by SIMD deprivation 2002-2005
70
60
Uptake rate %
50
40
30
20
10
0
1
Least deprived
2
3
4
5
Most deprived
In Grampian, during the second round of the pilot, 40.7% of individuals requiring colonoscopy were
given an appointment within two weeks. By eight weeks, 92.5% had received a colonoscopy
appointment. These figures were higher than the comparable figures for Fife (9.5% & 82.3%) and
Tayside (19.7% & 89.7%).
At the end of the second round of screening, 88.6% of people in Grampian who had a positive
FOBT result had had a colonoscopy performed. The percentage was higher in Fife (90.2%) and
Tayside (90.2%) residents.
Results of the second round of the pilot
In Grampian, 19.4 per 1000 of the population screened had a positive test. This compared with 19.2
per 1000 and 18.4 per 1000 persons screened in Fife and Tayside respectively.
The crude cancer (including polyps) detection rate for all ages per 1000 persons screened was 1.2
in Grampian, 1.4 in Tayside and 1.0 in Fife.
The probability that a person with a positive result for adenoma actually has an adenoma (positive
predictive value) where adenoma is the most serious diagnosis was 29% for both male and female
in Grampian, 31.8% in Tayside and 30.6% in Fife. This implies that approximately 1:3 people with a
positive result for adenoma in Grampian will have the disease. The positive predictive value was
higher for Grampian males (34.4) than females (20.7).
Cancers are commonly staged by measuring how much the cancer has grown and spread. Some
cancers are graded by looking at certain features of the cancer cells under a microscope. The stage
and grade of a cancer helps to predict how a cancer might behave, how 'advanced' it is, and how
well it might respond to treatment. The Duke’s classification is one system of staging bowel cancer
involving four stages. Duke’s A describes the earliest form of the cancer while Duke’s D describes a
cancer which has spread widely.
14
In Grampian, the majority of people with screen detected cancers were at Duke’s stage A, followed
by Dukes’ stage B. This implies that most cancers detected in Grampian were in the early stages
when treatment is more likely to be effective (Table 7)
Table 7: Percentage of people with screen detected cancers that are staged using
Duke’s criteria
Grampian
Fife
Tayside
Scotland
Stage A
39.0
37.2
43.1
40.1
Stage B
29.3
39.5
23.6
29.4
Stage C1
15.9
16.3
27.8
20.3
Stage C2
6.1
2.3
0.0
3.0
Stage D
0
2.3
4.2
2.0
Mortality from bowel cancer
The Standardised Mortality Ratio for bowel cancer showed that for the period 2001-2005 mortality
from bowel cancer in Grampian was 2.4% higher than in Scotland. Figure 9
Figure 9: Standardised Mortality Ratio for colorectal cancer by Health Board Area:
2001-2005
140.0
120.0
100.0
SMR
80.0
60.0
40.0
20.0
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0.0
Quality assurance
NHS Quality Improvement Scotland has as a major part of its remit the responsibility to develop
national standards against which to quality assure clinical services including screening programmes.
In February 2006 it established a project group to take forward work to develop a set of clinical
standards for the bowel screening programme. The standards encompass six areas, namely
general, call/recall, the screening process, the laboratory process, pre-colonoscopy assessment,
colonoscopy and histopathology.
These standards act as a guide for the national screening centre, boards and clinicians in providing
a high quality, effective screening programme. Some of the individual standards include:
 The provision of an effective bowel screening service which is available to eligible
Scottish residents
 An effective call-recall arrangement to ensure that all eligible individuals including people
in long-stay NHS care and those in the armed forces or prison are invited for screening
once every two years
 The number of people responding to bowel screening is maximised within the principle of
informed choice
15










Failsafe procedures in place to ensure that individuals receive the follow-up appropriate
to the outcome of their screening.
The provision of an information leaflet and invitation letter which give a full explanation of
the screening process including benefits and risks
Provision of a staffed helpline for all individuals participating in bowel screening
Minimising the time between returning the screening test and receiving the result
Provision of laboratory service which meets recognised professional standards
Minimising the interval between receiving a positive result and receiving a precolonoscopy assessment
Minimising the time between notification of a positive result and the performance of
colonoscopy
Provision of colonoscopy by an accredited colonoscopist to an appropriate standard
Completion of the investigation of the entire large bowel after incomplete colonoscopy
Histopathology is carried out in an accredited laboratory to an appropriate standard
In due course the bowel screening programme will be reviewed against these standards.
2.4
Diabetic Retinopathy
2.4.1 Background
Diabetes mellitus is a chronic and progressive condition affecting the transport of sugar from the
blood stream into cells to produce energy. Currently, it is estimated that there are approximately
173,000 people with diabetes mellitus in Scotland. In Grampian, the prevalence is about 3.1%
(Scottish Diabetes Survey, 2005).
The public health significance of diabetes lies in the serious health consequences that may occur if
blood sugar levels are not adequately controlled. Such complications include a higher risk of heart
disease, stroke, kidney failure, foot ulceration, which can lead to amputation and eye disease
(diabetic retinopathy) that can lead to blindness. The risk of developing any of these complications
can be reduced significantly by controlling blood glucose and blood pressure, by eating healthily and
taking regular physical activity.
The primary objective of offering eye screening as part of the routine care for people with diabetes is
the detection of referable and treatable (sight-threatening) retinopathy. According to currently
available data up to 10% of people with diabetes have retinopathy requiring specialist
ophthalmology follow up or treatment. The Diabetic Retinopathy Screening programme, DRS,
started in Grampian in 2000, providing retinal screening for the 10,000 people diagnosed with
diabetes mellitus at that time. Over the last five years alone, the number of people in Grampian
diagnosed with diabetes has almost doubled. In addition to providing services for the population of
Grampian, the screening programme also provides a grading service for NHS Highland and NHS
Shetland.
Screening is provided at the static screening centre, the DRS clinic, located in the David Anderson
Building on the Foresterhill site, Aberdeen and by three operational mobile units, which cover the
Aberdeenshire and Moray areas.
The screening process
All diabetic patients aged 12 and over in Grampian are offered diabetic retinopathy screening each
year using digital photography. General Practitioners register newly diagnosed diabetics onto the
SCI-DC database from where the details of patients eligible for screening are downloaded onto the
DRS call/recall system known as Soarian. This system sends the invitations and reminders to
patients and records the results of their screen. When a screened patient is found to have a
referable grade of retinopathy the Soarian system automatically generates a referral to
ophthalmology for assessment and treatment. The patient will then be temporarily taken off the
screening programme until treatment is completed. Those with minimal changes are offered early
recall to keep their condition under surveillance.
16
2.4.2 Current statistics
Available data show that there is a year on year increase in the number of diabetics referred to the
screening service. This increase reflects the increasing prevalence of diabetes in the region. It is
also known that a large number of cases of diabetes mellitus remain undiagnosed.
In 2006, there were 18,034 diabetics recorded on the Grampian diabetes register representing 3.4%
of the population, compared to 16079 people (3.1%) included in the 2005 diabetes survey. (Figure
10)
Figure 10: Number of patients on the Grampian Diabetes Register: 2003-2006
20000
18000
16000
Population on DRS database
14000
12000
10000
8000
6000
4000
2000
0
2003
2004
2005
2006
Year
In 2006/07, 16,486 appointments were offered by the DRS programme in Grampian
and
13,075(79%) people attended, compared to 11,495 appointments in 2004/05 with an attendance of
9,909 (86%). This shows a slight reduction in the proportion of those invited attending although a
greater number of people attended in 2006/07. Similarly, in 2006/07 the monthly attendance rates
ranged between 73%-83% compared to 2004/05 when they ranged between 85%-91%, again
showing a reduction in uptake. This drop in attendance was mainly due to a reduction in the number
of people attending at the Aberdeen site. (Figure 11)
In the 2005 Scottish Diabetes Survey, 77.9% of people registered as having diabetes mellitus in
Grampian, had a record of having retinal screening within the previous 15 months compared to
72.5% in 2004. These rates were higher than the Scottish average for both years, which were
67.7% and 60.4% respectively.
Figure 11: DRS attendance rate (Uptake) by area of screening: Aberdeen,
Aberdeenshire, Moray, April 2006 - March 2007
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Average
Apr
May
Jun
Jul
Aberdeen
Aug
Sep
Mobile Abdshire
Oct
Nov
Dec
Jan
Feb
Mar
Mobile Moray
17
Between April 2006 and March 2007, the slit-lamp attendance rate ranged between 76%-91% with
an average of 85%. A slit lamp is a microscope with a light attached which when combined with
special lenses, allows the doctor to look at the structures at the back of the eye (retina) in detail. It is
commonly used for older people with cataract where it is difficult to photograph the back of the eyes
during screening.
Most people (74%) attending screening in 2006/07 did not require eye drops in order to obtain a
satisfactory retinal image. This is important because administering drops results in appointments
taking longer and leaves the person temporarily sensitive to light and with blurred vision.
Abnormality detection rate
Of the 9,909 people screened in 2005, 660 (6.7%) were referred to the ophthalmologists for further
investigation. Of the 660 referred, approximately 86% were for retinopathy, while 13% of referrals
were for cataract. Of those with retinopathy, 27.2% were referred for urgent appointments, while the
remaining 59% were referred for a routine ophthalmology appointment.
Incidence of Diabetic Retinopathy
In 2005, 30.3% (4,845) of those on the diabetic register in Grampian were recorded as having
diabetic retinopathy of either left or right eye or both, compared to 28.8% (4,859) in 2004. There
were more people without retinopathy 56.2% (8,987) on the register in 2005, compared to 43.6%
(7,355) in 2004. The percentage of those without any record of whether or not they had retinopathy
dropped from 27.5% (4,641) in 2004 to 13.5% (2,159) in 2005 indicating an improvement in data
quality and completeness.
Registered blind/visually impaired
The aim of the diabetic retinopathy screening programme is to reduce the number of people with
diabetes mellitus who go on to lose their sight. Presently, available national data about the number
of diabetics who are visually impaired or registered blind due to diabetic retinopathy are scanty.
However, data from the Scottish Diabetic Survey show that 0.2% and 0.1% of those on the
Grampian diabetic register were recorded as permanently blind because of their diabetes in 2004
and 2005 respectively. Across Scotland, this survey also reported the number of people
permanently blind because of diabetes to be 0.2% and 0.1% in 2004 and 2005 respectively. These
slight decreases in percentage of blindness due to diabetes may be attributed to early detection and
treatment.
Quality assurance
The DRS programme in Grampian satisfies the recommendations of the Health Technology
Assessment report published in 2002 by the then Health Technology Board for Scotland (now part
of NHS Quality Improvement Scotland, NHS QIS) and the report produced by the Diabetic
Retinopathy Screening Implementation Group published in June 2003.
For the long-term quality assurance of diabetic retinopathy screening in Scotland national standards
were produced by NHS QIS in 2004. These standards cover:
 Organisation;
 Call-Recall and Failsafe;
 Screening Process;
 Proficiency Testing; and
 Referral
2.5
Antenatal Screening
2.5.1 Background
The UK National Screening Committee recommends that all pregnant women should be offered
antenatal screening for several infectious diseases which are of relevance during pregnancy. In
Grampian, routine antenatal screening for hepatitis B, rubella and syphilis has been ongoing for
over 20 years. Routine antenatal screening for HIV was introduced in 2003.
18
Pregnant women are also offered screening to detect foetal anomalies associated with conditions
such as Down’s syndrome and neural tube defects.
2.5.2 Infectious disease
Hepatitis B and HIV are viral infections that can be transmitted from infected mothers to their babies
at or around the time of birth (perinatal transmission). Babies acquiring HIV perinatally are at risk of
developing AIDS or dying in the first year of life. Those infected with hepatitis B may develop
chronic hepatitis B infection. They may also be infectious to others and are at increased risk of
developing chronic liver disease such as cirrhosis or hepatocellular carcinoma (primary liver cancer)
either of which can lead to premature death. Babies infected with syphilis or rubella during
pregnancy are at high risk of acquiring severe congenital defects which in some cases may not be
compatible with life.
The aim of screening for HIV, hepatitis B and syphilis is to enable the detection of these often
asymptomatic conditions in the mother early in pregnancy so that measures may be put in place to
reduce the risk to the foetus of acquiring the infection and reduce the risk of those infected having
the worst sequelae. For example, infection with hepatitis B can be prevented in around 90%-95% of
cases by starting at birth appropriate immunisation of infants born to infected mothers. After the
pregnancy treatment may also be offered to the mother.
In the case of rubella, the aim is to identify women who are not immune to rubella so as to offer
vaccination following the end of the pregnancy to protect the foetus in any subsequent pregnancy.
Having a positive rubella test indicates the mother is immune to rubella infection and, therefore, the
unborn child should be protected from intrauterine infection.
The tests are done on a venous blood sample that is usually taken from the pregnant woman at 16
weeks gestation. Confirmatory tests are performed when any of the initial tests are positive for
hepatitis B surface antigen, HIV antibody, syphilis antibody or negative for rubella antibody.
Current statistics- Screening tests for Infectious diseases: 1st April 2005-31st March
2006
Data for Grampian show that a total of 5595 antenatal screening requests were received between
1st April 2005 and 31st March 2006. (Table 8)
2.5.3
During this period the proportion of women attending antenatal care who had the test for hepatitis B
was 98.2%. There were six positive cases of hepatitis B of which five were new cases detected
through the screening programme.
The uptake rate for the HIV screening test was 96.2%. Results showed that one new case of HIV
was detected through the screening programme.
During the report period, the uptake rate for syphilis screening was 98.1% and no cases of acute
syphilis were detected.
The uptake rate for the rubella test was 99.6%. 119 did not have any detectable antibody.
Table 8 Screening tests for Infectious diseases: 1st April 2005-31 March 2006
Negative Positive Total
% Tested
Hepatitis B
5487
6
5595
98.2
HIV
5385
1
5595
96.2
Rubella
119
5454
5595
99.6
Syphilis
5491
0
5595
98.1
19
2.5.4 Down’s syndrome and Neural Tube Defect
The aim of screening pregnant women for Down’s syndrome and Neural Tube Defect, NTD, is to
reduce the burden of serious foetal abnormality by identifying women who are at increased risk of
having a baby with these conditions. Down’s syndrome is a genetic disorder characterized by a
combination of major and minor defects in body structure associated with some impairment of
cognitive ability and physical growth as well as a characteristic facial appearance. Neural tube
defects are serious birth defects of the brain and spinal cord.
All pregnant women attending for antenatal care are provided with information about the tests early
in their pregnancy to enable them to make an informed decision about whether or not to proceed
with the screening tests. Screening involves testing serum taken at 16 weeks gestation for markers
of these conditions i.e. alpha-fetoprotein (AFP) and human chorionic gonadotropin (hCG). A
detailed ultrasound scan is undertaken at 20 weeks to look for the serious structural abnormalities
associated with NTD.
Women whose results indicate a higher chance of foetal abnormality are offered a definitive
diagnostic test e.g. chorionic villus sampling or amniocentesis. The purpose, benefits and possible
outcomes are discussed with the women (and their partners if they wish) as well as the possible
options available to them should a positive diagnosis be made.
Guidance is awaited from the Scottish Government on changes to national screening policy for
Down’s and NTD. This would mean in Grampian moving to early biochemical and nuchal
translucency screening. Work has already been carried out to estimate the resources, financial,
staffing and equipment, which would be required to implement these changes.
Down’s Syndrome and Neural Tube Defect statistics - 2005/2006 results.
In 2005, 4767 pregnancies were screened for AFP. Of these, 115 had high AFP results. In total, ten
cases of NTD were identified, three in those with high AFP and seven in those that were not
screened. Nine cases of Down’s were also identified, four in those screened and five in those not
screened.
In 2006, 5221 pregnant mothers were screened for AFP. 170 of these had a high AFP result. Six
cases of NTD were identified; three from among those with high AFP and two from pregnancies that
were not screened. One was a case of closed spina-bifida where the AFP was normal. Ten cases of
Down’s were identified; four from pregnancies classified by the screening test as high risk and five
in those not screened.
The above data do not include the number of cases of Down’s Syndrome or NTD which were
missed by the respective screening tests. Thus, it is not possible to calculate the detection rates for
these screening programmes. For future reports, it is hoped to identify the number of missed cases
so that this important measure of the performance of screening can be provided. However, 100%
ascertainment of all missed cases can be difficult to achieve as the outcome for all pregnancies
booked in Grampian in a given time period is not necessarily known. For example, it is inevitable
that some pregnant women will leave the area before their baby is born.
The above data do demonstrate the significant increase in both the overall number of tests
performed as well as the almost 48% increase in the number of raised AFP results. This, in turn,
means the number of confirmatory (chorionic villous sampling or amniocentesis) tests performed
increases substantially resulting in a major increase in the workload of both the laboratory and the
clinical genetics service. It is recommended that workload is monitored closely over the next few
years as other changes may further add to the pressures on these services. For example, it is likely
that more chorionic villous sampling tests which consume significantly more resource than
amniocentesis, will be performed in preference to amniocentesis when Grampian moves to early
biochemical and nuchal translucency screening in the next few years.
20
2.6 Neonatal Screening
The current UK neonatal screening programme involves routine neonatal examination to screen for
congenital heart disease and other congenital anomalies, screening for inborn errors of metabolism
via the Guthrie bloodspot test and more recently hearing screening.
2.6.1 Guthrie Screening
Newborn babies are screened for 3 specific metabolic disorders; phenylketonuria, congenital
hypothyroidism and cystic fibrosis. The Guthrie test, as it is known, is offered to all newborn infants
in the U.K. In Grampian, every child born has blood collected on a special filter paper, the Guthrie
card, by heel prick. The test is most commonly done between day 5 and 7. The dried blood
specimens are sent to the Pregnancy and Newborn Screening Laboratory at the Yorkhill Children’s
Hospital in Glasgow where analysis of the bloodspot is carried out. Using cut off values, results of
the test are reported as normal or where the test results are slightly elevated, the test is repeated
and if the results are confirmed above normal limits notification occurs. The first point of contact is
usually a named paediatrician in the board where the infant resides who specialises in the condition
so that the infant can be examined and the diagnosis confirmed.
Phenylketonuria
Phenylketonuria (PKU) is an inherited genetic disorder that is characterised by an inability of the
body to utilize the essential amino acid, phenylalanine. Amino acids are the building blocks for body
proteins and they can only be obtained from the food we eat, as our body does not normally
produce them. In 'classic PKU', the enzyme that breaks down phenylalanine, phenylalanine
hydroxylase is completely or nearly completely deficient. This enzyme normally converts
phenylalanine to another amino acid, tyrosine. Without this enzyme, phenylalanine and its
breakdown chemicals from other enzyme routes, accumulate in the blood and body tissues. Excess
accumulation of these breakdown chemicals can lead to severe brain damage unless its effects are
prevented by providing adequate treatment, involving a special diet, very early on in life (usually
within 3 weeks of age).
Congenital hypothyroidism
Congenital hypothyroidism is a relatively common disorder, with an incidence of 1:3000 to 1:3500 in
white populations. Babies who have congenital hypothyroidism are born with only low levels of
thyroid hormone because their thyroid gland fails to develop properly during pregnancy. If the levels
remain low, it can cause severe learning disability and growth failure. The condition is treatable by
giving the baby thyroxine, which prevents the brain damage if treatment is started shortly after birth.
The reason that screening is of such benefit in congenital hypothyroidism lies in the fact that the
baby’s condition is not obvious at birth or for sometime after and so significant damage can be done
before the diagnosis is made.
Cystic Fibrosis
Cystic fibrosis (CF) is an inherited condition which affects organs in the body, particularly the lungs
and digestive system which become blocked with sticky mucus, making it difficult for the infant to
digest food and prone to chest infections. It affects over 7,500 people in the UK and is most
common in Caucasian people. In Scotland about 1:25 people are unaffected carriers. In 2003, there
were around 750 people in Scotland with CF and around half of them were aged 15 or less. In
Grampian, 2-3 cases of CF are identified each year and in 2003, about 36 children attended the
specialist CF centre at the Royal Aberdeen Children’s Hospital3. With modern management, the life
expectancy of individuals with CF has improved markedly over recent years.
Guthrie test statistics
In 2005, 5707 blood spot specimens from Grampian were analysed. Of these 0.14% were
insufficient for testing in the laboratory. In 2006, 5829 samples were taken of which only 0.03% were
insufficient. This performance compares well with other health boards with only three boards in 2005
and one board in 2006 having fewer insufficient samples.
3 (Healthcare services for children with cystic fibrosis in Scotland –
an evaluation of current provision)
21
Each year a small number of Grampian parents refuse the Guthrie test. In 2005 three refused and in
2006 four declined to have their child tested. This small but significant number of parents refusing
the tests, particularly for cystic fibrosis, has been observed nationally. It is thought it may be due to
the recent introduction of informed consent but no specific research has yet been carried out to
confirm this.
The National Guidelines/Protocols for Newborn Bloodspot Screening, published in July 2005,
recommends that blood samples be taken at day 5-74. This is to prevent a false positive result
occurring if the sample is taken too early but ensuring that the test is carried out soon enough after
birth to allow effective treatment to be started timeously where the result is positive. In 2006, 45
Grampian babies had bloodspot specimens taken at age 7 -14 days while two samples were from
babies over 14 days of age.
2.6.2 Newborn hearing screening service
Background
The Grampian Universal Newborn Hearing Screening programme (UNHS) was implemented in July
2005. Hearing screening is offered to all newborn babies up to the age of six months in Grampian
unless there is clear evidence of hearing impairment in which case babies are referred directly for
audiology assessment. Screening is usually offered before the mother and baby go home or within 4
weeks of delivery.
Prior to the implementation of universal hearing screening, the health visitor carried out a hearing
screen called the ‘Infant Distraction Test’ at 7-9 months of age. However, this test did not satisfy the
criteria for a modern screening programme. Significantly, a large number of babies who had only a
temporary hearing loss due to glue ear would fail that test while a substantial proportion of children
with permanent deafness encountered significant delays in having their condition identified.
Targeted newborn hearing screening was, and still is, provided for babies with a high risk of hearing
loss (premature babies, babies on the neonatal unit and babies with a family history of hearing loss).
Approximately 900 babies are born every year in the UK with permanent hearing loss. This may
seem a relatively small number but the implications of a permanent childhood hearing impairment
(PCHI) for the child and their family is enormous. There is considerable evidence to show that
hearing loss identified and management started (hearing aid) before the age of one year lead to
better outcomes in terms of emotional development and acquiring speech and language skills.
The aim of the Grampian Newborn Hearing Screening Programme is to identify all babies born with
a permanent bilateral hearing loss of greater than 40dB in the better ear. All babies born in
Grampian regardless of their area of residence are offered a newborn hearing screen. In 20052006, Grampian developed several local newborn hearing screening protocols including:
 Well Baby Hearing Screen Protocol
 Neonatal Intensive Care Unit Protocol
 Non-attendees Hearing Screen Protocol
 Decline protocol
 Audiology Referral Protocol
Current statistics
Between April 2005 and March 2006, 5490 babies were born in Grampian. During this period,
following the start of the rollout of the screening programme in July 2005, 3,788 babies were offered
screening. Of these 3,624 had a clear response requiring no follow up while 47 had a clear
response but required targeted follow up due to the risk of a progressive hearing loss. Forty-eight
babies were referred to Audiology due to no clear response in one ear and twelve due to no clear
response in both ears. Forty four babies missed two or more appointments, twelve declined
4 National guidelines/Protocols newborn Blood spot Screening including phenylketonuria, congenital hypothyroidism and cystic Fibrosis July 2005
22
screening and one withdrew consent partway through the screening process. Of those referred to
Audiology, 3 had a bilateral hearing loss requiring management, 1 developed an acquired hearing
loss, 5 did not attend for follow up and 4 are still under review. The remainder had normal hearing.
Quality assurance
Prior to the rollout of hearing screening in July 2005, a number of talks were given to raise
awareness of the hearing screening programme and its purpose. These were given to a wideranging audience of Health Visitors, Midwives, GPs and Teachers of the Deaf. Discussions were
also held with maternity, nursing and neonatal services managers as well as Ward Sisters to identify
facilities for testing, identification of babies requiring follow up and a place for the service to be
based. Information was further distributed to the wider NHS community via emails to GPs, global
emails and an article in the hospital newsletter.
The hearing screeners also undertook initial training to enable them to screen babies and convey
accurate, high quality information to parents regarding the screening process and the significance of
results obtained. This involved theoretical training, information from an infection control nurse,
practice with the screening equipment, supervised testing on the maternity wards and eventually
autonomous working with support when required. In November 2005, the first National Screener
Training Day was held in Perth and was attended by all screeners from across Scotland.
Towards the end of 2005, the Scottish Executive commissioned an evaluation of the rollout of
hearing screening in Scotland. The project was also to assess and make recommendations with
respect to the audiology and other follow-up services available following screening and diagnosis.
Professionals in Grampian involved in the provision of hearing screening and the follow-up services
contributed information on rollout locally and their views on how well the programme was
performing. The official report is awaited.
The final version of the NHS QIS Standards for Pregnancy and Newborn Screening were released
in October 2005. A QIS visit is anticipated, possibly in 2008-2009, to review the screening
programmes and assess their performance against the national standards.
SECTION THREE
3.0
Future developments
The national breast screening programme was the first screening programme to be implemented on
the basis of explicit criteria establishing the evidence for its effectiveness, its ethical and clinical
implications and its impact on finite healthcare resources. Since then the National Screening
Committee, with its United Kingdom-wide remit, requires programmes to meet a standard set of
criteria before it recommends their introduction. These criteria cover the condition, the test, the
treatment, and the screening programme.
The criteria can be summarised as follows:
The condition:
 should be an important public health problem
 the epidemiology and clinical course of the disease should be adequately understood
The test:
 should be safe, simple, precise and validated
 a suitable cut-off value should be defined and agreed
 should be acceptable to the population
The treatment:
 should be effective with evidence that early treatment leads to better outcomes
 clinical management of the condition and patient’s outcomes should be optimised for all
healthcare providers before the screening programme is offered
The screening programme:
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should be clinically, socially and ethically acceptable to health professionals and the
public
high quality randomised controlled trials should provide evidence that the screening
programme effectively reduces morbidity
the benefit from screening should outweigh the physical and psychological harm
the cost of the programme should be economically balanced in relation to expenditure
on medical care (value for money).
Recently the National Screening Committee has recommended that two new screening
programmes should be implemented in the United Kingdom. The evidence used by the committee in
reaching these conclusions is summarised below using its own criteria.
3.1 Screening for Abdominal Aortic Aneurysm
Background
Abdominal aortic aneurysm (AAA) is a common condition especially in older men. The major
complication of AAA is rupture which presents as a surgical emergency. Mortality after rupture is
very high and this has led to calls for screening programmes to detect and manage the condition
early. The national screening committee has recently recommended in principle that men over the
age of 65 years should be screened for AAA. This follows evidence from a Cochrane Review and a
Systematic Review by the US Preventative Services Task Force of a significant reduction in
mortality from AAA in men aged 65 to 79 years who undergo ultrasound screening. There is no
evidence for a similar benefit in women.
The condition
Abdominal Aortic Aneurysm qualifies as a major public health problem in that the prevalence of the
condition is high (5% in men aged 60-69) and increases with age (12% in men aged 80-89 years).
The natural history of the condition is well known. It occurs when the aorta below the renal arteries
expands to a maximum diameter of 30 mm or greater. Age, smoking and a family history are the
most significant risk factors for AAA. Although AAA may remain asymptomatic for years, an
aneurysm larger than 50 mm carries a high risk of rupture and approximately 1 in 3 do eventually
rupture. Mortality after rupture is high and is approximately 80% in those who reach hospital and
50% in those undergoing emergency surgery.
The Test
The screening test of choice is abdominal ultrasound scanning by a trained radiographer.
Ultrasonography of the abdomen is accurate and reliable in detecting AAA. It is non-invasive and
allows the antero-posterior (AP) diameter of the aorta to be measured accurately. A cut-off value
has been established below which rupture is less likely and above which the risk increases
substantially.
The Treatment
The treatment of choice for AAA is surgery. Elective surgical repair of aortic aneurysms aims to
prevent death from rupture. Surgery is effective and acceptable and mortality after elective surgical
repair is lower with screen detected AAA than in those with incidentally detected AAA. In the
Multicentre Aneurysm Screening Study 30 day mortality after elective surgery was 6% but after
emergency surgery it was 37%.
The Screening Programme
Both the Cochrane Review and the Systematic Review by the US Preventative Services Task Force
showed that ultrasound screening for AAA leads to a significant decrease in mortality from AAA in
men. These studies as well as the Highlands and Islands Aortic Aneurysm Screening Project
showed that the benefit of screening outweighs the cost.
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The protocol used in these trials of regular (e.g. three monthly to yearly) ultrasound surveillance for
aneurysms below 55 mm diameter, with referral for surgery if the aneurysm grew at more than 10
mm per year or reached 55 mm was generally acceptable to those participating in the trials.
3.2 Newborn screening for Medium Chain Acyl CoA Dehydrogenase Deficiency
Background
Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD) is a rare hereditary disease that is
caused by the lack of an enzyme required to convert fat to energy. The National Screening
Committee has recently recommended in principle that all newborn babies in the UK be offered
screening for MCADD. This follows a Health Technology Assessment Report in 1997 and a
successful pilot of screening for the disease over the last 5 years in the UK. Similar piloting is
ongoing in
Australia. In the United States, North Carolina and Massachusetts offer testing for
MCADD routinely as part of their newborn screening programme.
The Condition
Medium Chain Acyl CoA Dehydrogenase deficiency MCADD is a rare but potentially life threatening
inherited condition affecting about one child out of every 10,000 born in the United Kingdom. It is an
autosomal recessive genetic disorder, which means that it is inherited from both parents.
Complications of MCADD often arise when the child has an infection, or is experiencing prolonged
fasting. The most common features include vomiting and lethargy. In severe cases seizures, brain
damage, heart failure and other serious illness may occur. Long-term complications include
developmental, behavioural and learning disabilities and cerebral palsy. This qualifies MCADD as a
major public health problem.
The test
Several tests are available for detecting MCADD. The main test currently used is Tandem Mass
Spectrometry, TMS, which detects the abnormal metabolite octanoylcarnitine in the body. The test
is performed on either blood or urine samples. DNA/PCR testing can also be performed to confirm
MCADD in blood or dried blood spots. The TMS test is simple, safe, and precise and has a
sensitivity of 100% and a specificity of 100% making it acceptable to clinicians and the population.
Thus, the criteria of the National Screening Committee regarding test performance and acceptability
are met.
The treatment
Treatment for MCADD is simple, effective, and straightforward. It involves avoiding long periods of
time without eating and having meals that are high in carbohydrate and low in fats. Both breast milk
and commercial formulae are suitable foods. Infants should have at least one night time feed, or a
late night snack, to reduce the length of time they go without eating. Some children may be helped
by taking L-carnitine. This safe and natural substance helps body cells to make energy. It also helps
the body get rid of harmful wastes.
Special care must be taken if a person with MCADD becomes ill and has trouble keeping food
down. This is usually treated in hospital with an intravenous feed. It is important that children with
MCADD receive specialized management through a clinic with experience in treating this disorder.
The screening programme
Results of pilot studies, which have been ongoing in England since 2004, show that newborn
screening reliably identifies affected children before they are likely to develop symptoms. This
allows parents to use simple measures to avoid fasting or to ensure an adequate energy intake
during illness and thereby reduce the chances of severe illness or death. During the pilot studies,
there were no deaths from MCADD.
The screening programme would make use of the blood spot (the Guthrie test) currently collected
between 5 and 7 days of age from all newborns, so no additional procedures will be required. All the
blood tests in Scotland would be analysed at Yorkhill Hospital laboratory in Glasgow using their
Tandem Mass Spectrometer.
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In Scotland, a provisional decision to implement this screening programme has been made.
However, further guidance and timescales for the implementation process are currently awaited.
SECTION FOUR
Conclusions
Grampian continues to be well served by high quality screening programmes. Overall, and
compared with the rest of Scotland, uptake is good. However, maintaining and even improving this
position will be increasingly challenging. Programmes where particular work is required, are the
cervical and bowel screening programmes; cervical screening because uptake has been declining
in recent years and bowel screening because the QIS standard for uptake which has been agreed is
60%, a level which has not so far been achieved in Grampian or any of the other pilot boards. In
seeking to address these issues the importance of inequalities in affecting overall uptake levels
cannot be over emphasised.
The workload continues to increase in most of the programmes. This is due to a number of factors
including increasing incidence of the disease being screened for or the risk factors for the condition
(e.g. diabetes, obesity and diabetic retinopathy), an increase in the cohort eligible for screening e.g.
increase in the population over 50 or following the introduction of new technology e.g. LBC, new IT
systems. As a result ensuring adequate funding and other resources are available continues to be a
major issue affecting the efficient provision of current programmes, the smooth and timely
implementation of new developments and maintaining standards.
Finally, due recognition must be given to the skill and hard work of staff from many disciplines
across NHS Grampian who contribute in a variety of ways to the efficient and high quality delivery of
all the screening programmes. Grampian’s screening programmes enjoy a good reputation in other
parts of Scotland and this is in no small measure due to this commitment. Some particularly
challenging recent developments would not have been so successfully implemented without their
support, patience and goodwill.
Dr Susan Macphee, Screening Coordinator
Dr Emmanuel Okpo, Specialist Registrar in Public Health
January 2008
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References
The UK Collaborative Study of Newborn Screening for MCADD
The UK Newborn Screening Programme Centre
http://www.newbornscreening-bloodspot.org.uk
Scottish Health Survey
http://www.diabetesinscotland.org/diabetes/maintainPages/pdfFiles/SDS2004da.pdf
Healthcare services for children with cystic fibrosis in Scotland – an evaluation of current
provision
http://www.sehd.scot.nhs.uk/publications/DC20030221CysticReport.pdf
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Screening for Abdominal Aortic Aneurysm: Proceedings of a Meeting held at the Governor’s
Hall, St Thomas Hospital, London on 31st March 2004 under the auspices of the Vascular
Surgical Society of Great Britain and Ireland
Screening for Abdominal Aortic Aneurysm: A Best-Evidence Systematic Review for the U.S.
Preventive Services Task Force Craig Fleming, MD; Evelyn P. Whitlock, MD, MPH; Tracy L.
Beil, MS; and Frank A. Lederle, MD Annals of Internal Medicine 1 February 2005 | Volume
142 Issue 3 | Pages 203-211
Screening for abdominal aortic aneurysm Cosford PA. , Leng GC. Cochrane Database of
Systematic Reviews 2007, issue 2.
The Multicentre Aneurysm Screening Study (MASS) into the effect of AAA screening on
mortality in men: a randomised controlled trial. Ashton HA et al, the MASS Group. Lancet
2002 Nov 16; 360 (9345): 1531-9.
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