Download 5 Interventions to reduce eye health inequalities

A review of evidence to evaluate effectiveness
of intervention strategies to address inequalities
in eye health care
A report to RNIB
Author(s):
Mark R D Johnson, Vinette Cross, Mark O Scase, Ala Szczepura,
Diane Clay, Wesley Hubbard, Keith Claringbull, Philippa Simkiss
and Shaun Leamon
Date:
December 2011
[Logo of De Montfort University]
Document reference:
RNIB/CEP/01
Published by:
RNIB
105 Judd Street
London, WC1H 9NE
Sensitivity:
Internal and full public access
Copyright:
RNIB 2011
Commissioning:
RNIB, Evidence and Service Impact
Citation guidance:
A review of evidence to evaluate effectiveness of intervention
strategies to address inequalities in eye health care. Johnson
MRD, Cross V, Scase MO, Szczepura A, Clay D, Wesley H,
Claringbull K, Simkiss P and Leamon S. RNIB report:
RNIB/CEP/01, 2011.
Affiliations:
1. Mark R D Johnson, Mark O Scase, Wesley Hubbard and Keith
Claringbull — De Montfort University
2. Ala Szczepura and Diane Clay — University of Warwick
3. Vinette Cross — Wolverhampton University
4. Philippa Simkiss and Shaun Leamon — RNIB
Correspondence:
Contact: Professor Mark R D Johnson
Email: [email protected]
Acknowledgements:
The authors would like to thank everyone who supplied information
to the review team. Thank you also to the members of the steering
committee and review panel. The work was funded by RNIB.
Table of contents
Executive Summary ...................................................................... i
1 Introduction ........................................................................... 1
2 Methods ................................................................................ 2
3 Risk factors for preventable sight loss ................................... 5
3.1 Ethnic origin and Sight Loss .......................................... 5
3.2 Socio-economic deprivation and Sight Loss .................. 6
3.3 Age and Sight Loss ....................................................... 7
3.4 Other risk factors and sight loss .................................... 8
4 Barriers and motivators for attendance at primary care
services ............................................................................... 10
5 Interventions to reduce eye health inequalities: condition
specific activities.................................................................. 13
5.1 Glaucoma.................................................................... 13
5.2 Diabetic Retinopathy ................................................... 18
5.3 Age-related Macular Degeneration (AMD) .................. 22
5.4 Cataract ...................................................................... 23
6 Conclusions......................................................................... 25
7 Recommendations .............................................................. 26
References ................................................................................. 28
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v1.1
Executive Summary
In 2010, RNIB commissioned Mary Seacole Research Centre
(MSRC) at De Montfort University to review evidence relating to the
causes of inequalities in eye health, and interventions to reduce
inequalities, with particular reference to ethnicity, age, and socioeconomic deprivation. The focus was on preventive activity in
relation to specified eye conditions (glaucoma, diabetic retinopathy,
age-related macula degeneration (AMD) and cataract) and
interventions designed to improve eye health outcomes.
The authors adopted the conventional rules of Systematic Reviews
to ensure comprehensive coverage of databases of published
reports and journals. The review also included current research in
practice, grey literature, good practice activities, and Third Sector
initiatives. All searches and fieldwork were conducted between
September 2010 and January 2011.
The association between age and sight loss is well established and
prevalence figures for the four main eye conditions with age are
given. The small but growing UK literature of sight loss among
minority ethnic groups is reviewed; evidence of increased risk of
glaucoma in people of African-Caribbean origin, diabetes particularly
in South Asians and Asians, and cataract in Asians is examined. The
limited UK evidence of increased risk of AMD for these groups is also
discussed.
Evidence linking socio-economic deprivation and eye health
continues to develop. Several studies identified considered an
association between severity of glaucoma at presentation with socioeconomic deprivation; one study found that age and proximity of eye
health services but not socio- economic deprivation were associated
with poorer visual acuity in presentation of AMD. Smoking is another
risk factor for eye health and the association with AMD in particular is
highlighted.
The review found that visits to optometrists were usually symptom
driven. Barriers to primary eye care services identified include the
perceived cost of the sight test (even amongst those eligible for free
tests) and cost of glasses, the distance from the optometrist, even if
no more than a short walk, and eye health messages lacking focus
on a particular target group.
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i
Studies that examined awareness of glaucoma and mechanisms for
increasing awareness and attendance at eye test, including the use
of radio to transmit public health messages, are reviewed. As
concordance with treatment is key in preventing sight loss due to
glaucoma, studies that examined how to improve concordance
(adherence) are also considered. Medication reminders (telephone
alerts, active alerts on dosing devices), educational interventions,
motivational interviewing delivered by 'glaucoma educators', the
practitioner-patient relationship and clinical competence in referral
are all highlighted but NHS Evidence notes that more research is
required in order to support specific recommendations.
The major 'intervention' for diabetic retinopathy is screening and
regular check ups through the National Diabetic Retinopathy
Screening Service. Despite the underpinning national quality
standards framework there are variations in screening uptake and
studies have examined the impact of increasing patient awareness of
diabetic retinopathy, improving provider performance, improving
healthcare system infrastructure and processes. Although some
findings are promising there is caution that results may not be
generalised. Lessons from interventions to raise awareness of
diabetes in general include the use of link workers to encourage
lifestyle changes, case management in primary care, or diabetes
community champions using culturally adapted materials.
There are few studies relating to interventions to tackle cataract in atrisk groups; the majority of papers located referred to treatment
rather than prevention. One study by McNeil et al. (2004) did
examine Vitamin E supplementation on the development of cataract
in a randomised controlled study. However, their findings did not
support the use of vitamin E to prevent the development or to slow
the progression of age-related cataracts. Other studies examining
interventions in relation to cataract surgery have reported that a
nurse-led operative assessment and care may reduce waiting times
for surgery and increase patient satisfaction.
The treatment options for AMD are limited. As such, relevant
intervention studies related to AMD are also limited. Some recent
studies have suggested the possibility that patients experiencing the
early stages of AMD may be able to arrest progress through dietary
intervention. However, firm evidence of the benefits of a dietary or
supplementation strategy is still awaited. Numerous studies have
also examined advances in the clinical treatment of the exudative
ii
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form of AMD with the use of laser treatment and now, more
commonly, intraocular injected drugs. However, it was not the remit
of this review to examine clinical therapies, per se.
The review found that the majority of studies into inequality in eye
health have concentrated on the needs of those found to have sight
loss and the maintenance of their quality of life, or on treatments,
rather than on the potential to prevent sight loss through earlier
detection. Models of good practice that work for the majority, will
usually have the potential to lead to some improvement in these
groups, but it is also the case that studies of health outcomes
consistently report that poor, deprived or marginalised groups, older
people lacking social support, and minority ethnic groups, gain
relatively less from such changes.
Previous research consistently points towards targeted interventions
and specific approaches. However, they often have differing levels of
evaluation. Despite this, certain interventions recur as
recommendations from research, or as the focus of short-term
projects expected to bring about change.
Recommendations
Based on the existing research identified by the review, the following
recommendations are proposed as avenues of interest for the
development of intervention strategies to address inequalities in eye
health care:
1. Awareness raising and information provision in targeted
media campaigns
The evidence indicates that it is necessary to identify and use media
specific to the at-risk group of interest. General press or media
releases, which do not use role models or examples (and cultural
signifiers) aimed at specific sub-populations, are unlikely to meet this
need and campaigns should be explicitly targeted at risk groups
2. The use of Eye Health Champions
This approach seems to be the most likely to offer potential to
succeed. The continuing funding of such projects suggests that
process studies and practitioners at least regard them as viable.
Properly designed research should include formal evaluation which
follows the intervention to a point where measurable outcomes have
been reported: this will require client monitoring by service providers
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iii
3. Motivational Interviewers or other forms of Personal Support
Reports were located which focused on strategies leading to the
training or ‘empowerment’ of service users. While promising, few
were able to show clear clinical outcomes although they all state that
the processes involved were popular among both practitioners and
patients. ECLOs (Eye Care Liaison workers based in eye clinics,
sometimes employed under other job titles), whose primary role is to
support people with newly diagnosed sight loss, might also play a
significant role in supporting those newly diagnosed with sightthreatening conditions in a more preventive/ protective role.
4. Transparent Care Plans
It is clear from research that many service users, especially those
who are older, less well educated, or from non-English-speaking
backgrounds, find it difficult to follow care instructions and may not
understand or even know the name of their condition (low health
literacy). There is no agreed measure for this, and no clear evidence
of effectiveness of such approaches. More research is required.
5. Professional Development and Training of Service delivery
staff
There remain shortcomings in the ability of service delivery staff to
recognise need or to support members of at-risk groups properly to
access and adhere to programmes of preventive eye health. This is
sometimes referred to as ‘cultural competence’, and refers not only
to ethnicity but other aspects of lifestyle. Staff training is necessary –
with monitoring of changes in practice and better recording and
monitoring of users, in terms of ethnicity and other characteristics to
enable a better picture of service uptake and inequality.
6. Structural Changes in service delivery
A number of reports drew attention to weaknesses in systems of
service delivery, including data recording and monitoring, and
tracking of patients along care pathways, some of which were not
well designed for vulnerable users. There is evidently scope for
improvement here, although no published papers report interventions
that demonstrate effects on inequality.
iv
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1 Introduction
In 2010, RNIB commissioned Mary Seacole Research Centre
(MSRC) at De Montfort University to conduct a review of the
evidence and research literature in order to understand better:
1. Factors that influence whether people most at risk of avoidable
sight loss attend for an eye examination;
2. Factors that influence these groups in the uptake and/or drop out
of a referral from primary care to secondary care;
3. The drivers behind uptake of sight-protective activity and
adherence to treatment following diagnosis with an avoidable
sight loss condition.
The primary objectives were, for people most at risk of developing
avoidable sight loss, to:
4. Understand the barriers and enablers to the uptake of primary eye
care services;
5. Identify previous interventions designed to promote the uptake of
primary eye care services;
6. Understand the factors that influence attendance at secondary
eye care services;
7. Understand the factors that influence the uptake and adherence
to treatment within eye care;
8. Identify previous interventions designed to increase patient
retention in secondary care;
9. Identify previous interventions designed to increase adherence to
treatment following diagnosis.
Thus, the review evaluates evidence relating to causes of, and
interventions to reduce, inequalities in eye health, with particular
reference to effects relating to ethnic identity or origin, age, and
socio-economic deprivation. It examines general access to screening
at the optometrist and the GP surgery, plus generic data relevant to
eye health promotion.
When considering factors that influence attendance, referral and
adherence to treatment the review focuses on patient education,
information, advocacy and adherence related to the following eye
conditions: glaucoma, diabetic retinopathy, cataract and age-related
macular degeneration (AMD).
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2 Methods
The review sought to go beyond the conventional approaches of a
systematic review, by including not only published reports and
journals, but also research in practice, grey literature and good
practice activities, and Third Sector initiatives, many of which are
omitted from the conventional evidence base (see Tugwell et al.,
2010).
Major electronic Databases searched included Embase,
Medline/PubMed, socialcareonline (SCIE), NHS Evidence, CINAHL,
PsycInfo, ASSIA, Web of Knowledge, BMJ Evidence, King's Fund,
College of Optometrists & RNIB libraries. Relevant electronic
networks of practice were contacted to identify good practice,
unpublished reports, and work in progress. Hand searching of
selected key journals, archive collections at MSRC, articles in
‘unconventional’ and non-peer-reviewed journals not normally listed
in the major databases, and other sources such as
newspaper/magazine/media coverage located via internet searching
(e.g. those aimed at older people). The research team also
contacted research-funding bodies and were able to follow up a
small number of registered trials and links provided by RNIB and
other key stakeholders. All searches were conducted between
September 2010 and January 2011, as was any fieldwork.
Inclusion criteria were deliberately set broadly, to ensure that all work
that might be applicable to the UK practice setting, and to minority
groups present in significant numbers in the UK, was included, while
not excluding work that might have elements of transferability of
practice. Exclusion criteria included intervention studies prior to 1990
and studies involving children. Studies that did not provide adequate
description or explanation of the composition of ‘at risk’ groups were
also excluded. Descriptive studies without an intervention were
considered, and included if they contributed to the overall findings.
The focus of the review was on preventive activity, rather than
treatment of established sight loss and eye disease. As such, studies
detailing advancements in clinical or surgical treatments without
reference to a clear preventative intervention were excluded.
The review followed the rules of Cochrane and all Systematic
Reviews: a structured, systematic approach; an explicit search
strategy; comprehensive coverage of databases; quality criteria and
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cross-checking; and an indication of the strength of evidence
located. The lead author examined and graded all articles. A
member of the commissioning advisory group independently
reviewed the grading. A second member of the advisory group
reviewed any conflicts of opinion.
For data quality assurance, Table 1 compares the categories used in
this review (strong, fit for purpose, acceptable and weak) with those
used in the NHS Evidence specialist collection for ethnicity and
health (NICE: the NHS Institute for Health & Clinical Excellence), and
recommended by the Centre for Reviews and Dissemination (CRD:
www.crd.york.ac.uk ).
The review authors recognise that even ‘strong’ evidence may lead
to inconclusive results, and that weaker evidence may prove
insightful and compelling when accumulated over a number of
reports. As such, all evidence collected during the review was
graded. A summary of the evidence collected and graded during the
review is contained in Annex A to this report.
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Table 1: Strength of Evidence: categories compared
CRD CRD
Comment
Rating
Description
NHSE
(CRD 2009)
e&h
Cochrane and
similar Systematic
Reviews
1
Experimental
Few in number;
A1
studies e.g.
have to meet other
RCT
quality criteria
2
QuasiFew in number;
A2
experimental
have to meet other
study
quality criteria
3a
Controlled
Ranking depends
B1
Design: Cohort on strength and
Studies
design quality
3b
Controlled
Ranking depends
B2
Design: Case
on strength and
Control
design quality
Studies
4
Observational Ranking depends
C 1-2
Studies (no
on strength and
controls)
design quality and
quality of
description and
insight into process
5
Expert Opinion May be upgraded if D1
based on
philosophically
research or
well-founded,
consensus
raises significant
issues for practice
Descriptive or Seldom adds to
D2
Demotic
overall knowledge
argument
Use of stereo- Needs to be
E
type or poor
exposed or noted if
categorisation contributes to Bad
practice
Practice Literature
and narrative
evidence reviews
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Evidence
Review
Grade
Strong
Strong
Strong
Strong
Fit for
Purpose
Fit for
Purpose
Acceptable
Weak
Excluded but
may be
noted.
Dependent
on
methodology
3 Risk factors for preventable sight loss
3.1 Ethnic origin and Sight Loss
There is a growing literature relating to issues of sight loss among
minority ethnic groups. This demonstrates that there is at least an
increased risk of sight loss among minority ethnic groups.
The incidence of glaucoma is reported to be greater in people of
African-Caribbean heritage than in other ethnicities (Wormald et al.,
1994; Quigley & Broman, 2006; Rudnicka et al., 2006), with the risk
of developing glaucoma reported to be approximately 4-8 times
greater among this group compared to the white population
(Wormald et al., 1994; Racette et al., 2003; Friedman et al 2004;
Burr et al 2007). Disease development also occurs 10–15 years
earlier in African-Caribbean people (Racette et al., 2003).
A strong association also exists between African-Caribbean origin
and late presentation in glaucoma (Wormald et al., 1994; Fraser et
al., 1999). Late attendance is considered a significant risk factor for
subsequent blindness caused by glaucoma (Wilson et al., 1982;
Mikelburg et al., 1986; Burr et al., 2007), which serves to compound
the risk of sight threatening glaucoma in people of African-Caribbean
heritage.
Ethnicity is also a risk factor for diabetic retinopathy, largely due to
the raised incidence of diabetes in certain communities. Pardhan et
al. (2004), examining diabetic retinopathy in Asians and White
people (“Caucasians”) attending a hospital diabetic clinic, reported
that south Asians demonstrated significantly higher rates of sight
threatening retinopathy (STR) and that ethnicity was significantly
associated with STR. More recently, a report by Access Economics
Pty (Access Economics, 2009) suggested approximately a 35%
increased risk of visual impairment in Asians versus white people
from the UK due to diabetic disease.
The review was able to locate only one paper from the UK that
explored the relationship between ethnicity and the prevalence or
incidence of AMD (Das et al., 1994). Examining eye disease in a
population in Leicester, the authors reported that after adjustment for
age, there were no statistically significant ethnic differences in the
prevalence of macular degeneration. However, the authors went on
to suggest that the age profile of the participants, relative to the age
profile for AMD, may have led to the apparent lack of statistically
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significant difference. By contrast, a large US study (Klein et al.,
2006) examining the prevalence of age-related macular
degeneration in four racial/ethnic groups reported that white
populations are more susceptible to AMD compared to black,
Hispanic and Chinese populations. Reported prevalences were
5.4%, 2.4%, 4.2% and 4.6%, respectively.
For cataract, Das et al. (1990) examined 240 people and found that
Asians had a significantly higher prevalence of cataract compared to
people of European descent (30% compared to 3% in people aged
under 60 years and 78% compared to 54% in those aged 60 years
and over). The authors also reported age-related cataract developed
earlier in the Asians. A study by the US Eye Diseases Prevalence
Research Group (Congdon et al., 2004) found that the age-adjusted
prevalence of cataract among men was significantly higher for whites
(odds ratio = 1.09; 95% CI, 1.02-1.16) than blacks, although the
prevalence of cataract did not differ between blacks and whites for
women (OR = 1.03; 95% CI, 0.97-1.09). The authors reported a
number of limitations related to the sample populations used to
develop the prevalence data that might influence the application of
this study’s findings.
Previous research shows that the specific causes of visual
impairment, and especially blindness, vary greatly by ethnicity. More
research is required, however, to understand better the prevalence
of sight loss among different ethnic groups in the UK.
3.2 Socio-economic deprivation and Sight Loss
There is a growing consensus of opinion that, as with most other
health conditions, there is an association between poverty or socioeconomic deprivation and sight loss.
Fraser et al. (2001), in a case-control study of late presentation of
glaucoma, demonstrated that severity of glaucoma at presentation is
associated with area and individual deprivation. Sukumar et al.
(2009) reported that patients from socio-economically deprived
backgrounds presented with more advanced field loss compared
with patients from more affluent backgrounds. Ng et al. (2010), found
both socio-economic deprivation and age were associated with
severity of glaucoma at presentation, with patients from areas of
higher socio-economic deprivation presenting with more advanced
glaucoma. Since late presentation is an important factor for
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subsequent blindness (Wilson et al., 1982; Mikelburg, 1986; Burr et
al., 2007), the evidence would suggest that deprived groups may be
at greater risk of going blind from glaucoma.
This association may not, however, hold across all conditions, since
Acharya et al. (2009) reported that age and location, but not socioeconomic deprivation, were associated with poorer visual acuity at
presentation in Exudative AMD.
Fraser et al. (2001) suggested the association between socioeconomic status and late presentation might be interpreted in a
number of ways. Firstly, socially patterned differences in health
seeking behavior may operate (i.e. regular sight testing is associated
with higher social class). Alternatively, long-term deprivation may
lead to more rapidly progressive and aggressive disease. Work by
Nazroo and others (Nazroo and Williams, 2005; Demakakos et al.,
2008. See also current work by the Marmot commission:
http://www.marmotreview.org/) consistently reports worse health in
all aspects among those with lower incomes, living in deprived areas,
or with lower perceived social status, without regard to specific
conditions, eye care, or mechanism. Thus, deprivation may be
associated with poor health (as both cause and effect), of which poor
eye health is one component.
3.3 Age and Sight Loss
There is a well-established expectation that sight loss is associated
with age and that most eye conditions such as glaucoma, macular
degeneration and cataract will increase in both prevalence and
severity in older age groups (Access Economics, 2009; Coleman et
al., 2008; Evans et al., 2002).
It is reported that approximately 2% of people older than 40 years
have chronic open angle glaucoma, rising to almost 10% in people
older than 75 years in white Europeans (NHS Evidence, 2010). In
black and Asian populations, the average estimated prevalence in
those older than 70 years of age is 16% and 3%, respectively. While
the odds ratio per decade increase in age is 2.05 in white
populations (95% credible interval (CrI) 1.91 to 2.18), it is 1.61 (95%
CrI 1.53 to 1.70) in black populations, and 1.57 (95% CrI 1.46 to
1.68) in Asian populations (Rudnicka et al., 2006). This suggests that
whilst black populations have the highest OAG prevalence at all
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ages, the proportional increase in prevalence of OAG with age is
highest in white populations
Pooled data from three large-scale population studies estimates the
prevalence of AMD in those aged 55–64 years to be 0.2%, rising to
13% in those aged 85 years (Smith et al., 2001). Klein et al. (2006)
reported that AMD was approximately 11 times more common in
those aged 75–85 years than those aged 45–54 years.
The prevalence of vision impairing cataracts for age groups over 65
years has been estimated to be approximately 11% in the 65–69 age
group, rising to 33% in the 75–79 age group and 56% in the 85+ age
group (Thompson et al.,1993).
Examining visual acuity, Reidy and colleagues (1998) reported that
the population prevalence of bilateral visual impairment (visual acuity
< 6/12) was 30% in people aged 65 years or older. Evans et al.
(2002) reported that for people aged 75–79 years, prevalence rates
for visual impairment (i.e. binocular visual acuity <6/18–3/60) were
6.2% (5.1% to 7.3%), rising to 36.9% at age 90+ (32.5% to 41.3%).
Blindness (visual acuity of <3/60) was 0.6% (0.4% to 0.8%) in the
age group 75–79, compared with 6.9% (4.8% to 9.0%) at age 90+.
Applying the criteria used by Reidy et al. (1998) (i.e. visual acuity of
<6/12; the American definition of visual impairment) increased by
60% the age specific prevalence estimates for visual impairment.
3.4 Other risk factors and sight loss
A review by O'Donnell (2009) reported evidence of a strong genetic
link to glaucoma. Citing a review by Coleman (1999), it was noted
that at least six genes have been identified which increase the risk of
developing glaucoma. The author went on to report that a study in
the US suggested the risk was trebled in first degree relatives, while
a European study (Wolfs et al., 1998) found the risk rose to ninetimes that of non-relatives. These findings strengthen the assertion
that glaucoma awareness programmes should have a family focus.
Diabetes is also a strong risk factor for developing preventable sight
loss. Klein (2007) reported a clear link between duration of diabetes
and risk of developing retinopathy. For type 1 diabetic patients,
diabetic retinopathy was evident in approximately one-fifth of patients
who had had diabetes for 5 years or less, compared to 98% of
patients who had had diabetes for 15 years or more. Among type 2
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patients, prevalence was 29% and 78% for patients with a disease
duration of 5 and 15 years, respectively.
Observational studies and clinical trials have documented the
importance of glycaemic (HbA1C) and blood pressure control in the
development and progression of diabetic retinopathy (Klein, 2007).
As mentioned above, Ethnicity is a significant risk factor for diabetic
retinopathy. This is largely due to the raised incidence of diabetes in
certain communities. In particular, South Asian individuals have a
four-fold to six-fold greater risk of developing type 2 diabetes and
contract the disease at an earlier age compared with other ethnic
groups. There are also raised levels of diabetes among people of
African-Caribbean origin (Khunti, 2009; Gill et al., 2003).
Smoking is known to be a risk factor for a number of eye conditions.
Being a current smoker is associated with an increased risk for
cataract surgery, with an odds ratio (OR) of 2.34 (95% CI, 1.075.15); being a former smoker has on OR of 3.75 (95% CI, 2.26-6.21)
(Janghorbani et al., 2000). Smoking also has a strong association
with AMD. A systematic review by Thornton et al. (2005) found that
of 17 studies, 13 reported a statistically significant association
between smoking and AMD, with an increased risk of AMD of two- to
three-fold in current smokers compared with never-smokers.
Smoking is unevenly distributed among the population, being
commoner among more deprived social groups, and in certain
specific minority ethnic groups.
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4 Barriers and motivators for attendance at
primary care services
Encouraging those at particular risk of eye disease to seek an eye
examination is seen as a public health imperative fundamental to
early detection of preventable eye disease. Research has identified
a range of motivators and barriers to seeking an eye examination.
In a postal survey of 5,000 people over sixty years of age in the UK
(McLaughlan and Edwards, 2010), nearly two-thirds (60%) of
respondents who had not had their eyes tested in the past two years
said their main reason for not going was that they had not had a
problem with their eyes. Seventeen per cent of all respondents who
had not had their eyes tested in the past two years said that the cost
of glasses was the main reason why they had not been for an eye
test. Examining the results by socio-economic group indicated that
cost was much more likely to be a barrier for the socio-economic
group DE compared to other groups (AB, C1 and C2). Eligibility for a
free eye test appeared to have little impact, mentioned by just 1% of
respondents as a key motivating factor.
Other studies have also reported cost as a potential barrier to
accessing primary eye care services. Cross et al. (2007), in a
qualitative investigation of African-Caribbean people outside the eye
care services, reported that feeling pressured by the potential cost
implications of a visit to the optometrist was a theme in most
negative responses. Nearly one-third (29%) of participants felt that
eye test charges did or would deter people from visiting the
optometrist. Awoben et al. (2009), also in a qualitative study among
the African-Caribbean population, reported perceived cost of eye
tests (despite all participants being over 60 years old and entitled
therefore to a free eye test) and fear of being pressured to purchase
expensive glasses were prevalent barriers among the participants in
the study.
Interestingly, in the study by McLaughlan and Edwards (2010) the
majority (59%) of people reported that they thought the main purpose
of an eye test was to detect eye disease early and a further 15%
thought that the main purpose was to check the general health of the
eyes. However, differences in perception were found amongst
demographic groups; most notably, people in lower-income groups
(socio-economic group DE) were more likely to regard checking to
see if a new prescription is required as the most important reason to
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attend the optometrist. In comparison, people in socio-economic
groups AB and C1 reported the most important reason as 'have the
general health of the eye checked'. Of further interest, almost a
quarter of respondents reported that they had regular eye tests
because they were aware of the optometrist’s ability to detect other,
non-sight-related health issues. It was suggested that this could
indicate that some older people might construe optometrists more
broadly, as health professionals, rather than people who merely sell
glasses. The paper did not report the characteristics of those seeing
it as a health issue.
Cross et al. (2007) in their study of African-Caribbean people outside
the eye care services noted, however, that although participants'
attitudes to health in general reflected a ‘health promotion
perspective’, eye health was not integral to their notions of
preventative health behaviour. Eyes were not seen as part of
general health and any visit to the optometrist was usually symptomdriven. Patel et al. (2006) also reported attitudinal barriers showing
visual health was not a priority among the Indian living in west
London; moreover, they suggest the elderly are resigned to a 'fate' of
poor vision in old age.
Another barrier to accessing primary care services may be the
distance to, or physical accessibility of, screening sites. A study by
Day et al. (2010) mapped existing services against need and
demonstrated a clear mismatch between areas of deprivation and
location of optometry. As with previous studies (Fraser et al., 2001;
Ng et al., 2010), the results showed that late presentation was
associated with areas of high deprivation. Work in the London
borough of Tower Hamlets (Simons 2009) has shown that
populations living more than a short walk from ‘high street’
optometrists are less likely to have checkups.
Although the review located a number of references to the
desirability of encouraging better uptake of eye health checks, and
some evidence of under-use among the index at risk groups
(minority ethnic, poor and older people), there was little published
specifically relating to interventions that might increase general
uptake. Indeed, evidence relating to effectiveness and inequalities in
uptake tended to suggest that although it was possible to increase
attendance at checks, there was less evidence of improved clinical
outcomes as a result (Chou et al., 2009; Swamy et al., 2009).
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Taylor et al. (2004), examining the need for routine eye
examinations, suggested that frequent routine eye examination of
those with normal examination results may not be cost effective.
They suggested health promotion messages should target those at
higher risk, such as those with diabetes or a family history of eye
disease. Moreover, Smeeth et al. (2003) in an RCT to determine the
effectiveness of screening for visual impairment in people aged over
75 (who are entitled to an annual NHS general health check at their
GP), did not find that the addition of a vision screening component in
a general health check led to significantly higher uptake of corrective
provision. Burr et al. (2007) found that while there might be an
argument for targeted screening of high risk groups (defined as older
or Black people and those with a family history of disease), there
was no case for inclusion of glaucoma screening in national
screening programmes, although advising better opportunistic case
finding at ‘regular eye examinations’.
The reasons for the aforementioned findings are likely to be
multifaceted. A failure to follow up cases, the duration of the studies
being of insufficient length to identify differences in clinical outcomes,
or indeed, the fact that measures were not recorded against the ‘risk
factors’ of concern, may all be contributing factors. In particular,
Smeeth et al. (2003) suggested one reason for their findings was
that the majority of older patients might already be in touch with eye
care services; although the study identified a significant number of
cases of pathology and new referrals, including previously
unrecorded cataracts.
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5 Interventions to reduce eye health inequalities:
condition specific activities
5.1 Glaucoma
Recent NICE advice on commissioning of services notes that
controlling glaucoma to prevent or minimise further damage is crucial
to maintaining a sighted lifetime (NICE 2009). The guidance does not
make specific reference to actions to reach high-risk groups, but
does note that commissioners should recognise a need to achieve
targets associated with equalities legislation by taking into account
higher prevalence in some ethnic groups.
5.1.1 Awareness raising and education
A number of studies have sought to examine awareness of
glaucoma and the possible mechanisms of increasing awareness
and attendance for an eye test.
Cross et al. (2005) reporting on glaucoma awareness and
perceptions of risk among African-Caribbeans in the UK, found that
the majority (67%) of participants reported that they had heard of
glaucoma before taking part. Reported knowledge derived
principally from family experience. However, the potential limitations
of family as a source of information were apparent when participants
attempted to map relatives with vision-related conditions onto a
family tree. Several remembered relatives who were blind, but were
not sure why and said they had not asked. Previous research by
Eke et al. (1999) has indicated that siblings of patients with
glaucoma have lower awareness of glaucoma and glaucoma
screening services than their offspring.
Of further interest from the study by Cross et al. (2005) was the fact
that despite 79% of participants having undergone an eye
examination in adult life, of those who had heard about glaucoma,
only a minority (11%) cited an optometrist as the source of the
information. The capacity for primary eye care to enhance glaucoma
knowledge appeared under-utilised and inconsistent across modes
of service delivery.
In their study of glaucoma patients, Green et al. (2002) point out that
relevant health promotion information “is usually only found in eye
clinic waiting rooms where the population is already informed”.
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In an examination of the needs of 'frail older' people, Cattan et al.
(2010) concluded that older people often felt they had not been given
clear and detailed explanations of their eye condition or the risks
associated with them. In particular, the authors noted that few care
staff had much knowledge of sight-related issues despite reported
regular visits from optometrists.
In a study examining the impact of mass media on public healthseeking behaviour, Baker and Murdoch (2004) ran a pilot study to
assess how successful a newspaper advertisement and a radio
interview about glaucoma could be at reaching their target
population. The pilot health intervention involved residents in
Southall (West London) and the Isle of Wight. The sample
demographics comprised in Southall: Indian (89%), African (10%)
and other (1%), and in the Isle of Wight: White (Described as
Caucasian) 100%. Overall, the proportion who had heard of
glaucoma increased from 54% before the intervention to 60% after
the intervention. The proportion who had heard of the disease
increased by 13% in Southall and by 8% on the Isle of Wight — a
significant effect in both areas. This was attributed to both the advert
and interview in Southall, but could be attributed to the newspaper
advert only in the Isle of Wight. The authors suggested that this was,
in part, due to the majority of the community in Southall listening to
the same local radio station, whereas only 50% of the community in
the Isle of Wight reported listening to local radio. They concluded
that further research was required to determine the best method of
reaching the target population through radio.
In a follow-on study, the same group extended their research to
investigate a public education campaign to increase awareness and
change behaviour with respect to ocular health, administered
through television, local press, local radio and places of worship
(Baker and Murdoch, 2008). The target population again was Indian
residents in Southall, Ealing, aged over 60 years of age and the aim
was to increase attendance at the local optometric practice. The
findings showed that the health campaign more than doubled the
proportion of people who had heard of glaucoma (22% to 53%).
However, despite the study using bright, colourful and frequently
aired television adverts, radio had the most impact: 60% of those
who had heard of glaucoma had done so via the radio. Posters in
community settings and adverts in newspapers also had a much
smaller effect than radio. The authors concluded that radio was the
most effective medium through which to reach the target audience in
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this study. Of note, however, is the fact that although the campaign
raised awareness of glaucoma, the study did not show a change in
health seeking behaviour (i.e. there was no apparent increase in
attendance at the optometrist).
5.1.2 Concordance with treatment & care
In addition to early detection, concordance with or ‘adherence to’
recommended treatment is particularly important in glaucoma
because unlike some chronic conditions in which failure to take
medication produces noticeable symptoms, non-compliance with
glaucoma medication as prescribed may produce no obvious
symptoms. Despite this, and perhaps because of the asymptomatic
nature of glaucoma, in chronic glaucoma management, the
proportion of non-compliant patients is reported as high as 50%
(Pappa et al., 2006).
Tsai et al. (2007) emphasise that the reasons for compliance issues
are multifactorial. In a study involving over 250 glaucoma patients,
nearly one-fifth reported relying on others for the administration of
drops. Inadequate vision and trouble with manual dexterity were the
leading causes of dependency. The authors concluded that although
most individuals may have little difficulty with the use, storage, and
handling of eye drops, a broad variation in reported practices exists,
suggesting a need for better instruction in eye drop administration.
Other reasons for poor compliance include missed doses, cessation
of therapy, instilling too much, improper timing of multiple
administrations, inconvenience of maintaining the treatment in daily
life and working hours, and general or local side-effects of
medications (McLaughlan and Winyard, 2007). That said, it may also
be difficult to actually measure the degree to which patients do follow
their treatment regime, and some studies have used technological
interventions which both encourage regular use, and measure it.
Nordmann et al. (2010a) measured treatment concordance using a
computerised device (Travalert®) aimed at improving concordance
by reminding patients when to instill their glaucoma medication and
providing physicians with objective concordance data for treatment
decisions. Global compliance over an 8-week period was 60%;
denoting 40% of the instillations were missed. This was consistent
with previous work (Nordstrom et al., 2005). In patients with low
levels of concordance, concordance over the first half of the study
(i.e. first 4 weeks) was worse at weekends. The authors suggested
that questions and strategies to promote concordance with treatment
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and care might focus on weekend actions. Interestingly, factors
predicting concordance were unrelated to socio-demographic and
glaucoma parameters.
Okeke et al. (2009), in a randomised controlled trial, also
investigated the impact of medication reminders (in the form of
telephone reminders and active alerts on their dosing devices), in
association with educational interventions, on treatment concordance
among patients. They found that the multifaceted intervention
programme significantly enhanced the compliance rate from 54% to
73%. However, the authors were unable to determine which aspect
of the intervention was most useful. Moreover, the use of intra-ocular
pressure (IOP) as a clinical outcome identified that improvement in
concordance was not matched by lower IOP levels. In addition, data
showed that poorly adherent patients increase drop taking two
weeks prior to their appointment suggesting that IOP measurements
are not an accurate measure of adherence. Also of interest was the
fact that the authors reported that the combined intervention did
effectively raise concordance in white patients, but not among Black
Americans.
The introduction of educational interventions in glaucoma treatment
has also been suggested as potentially beneficial to combat
obstacles to concordance in a UK setting (Lacey et al., 2009). Using
a qualitative approach (i.e. focus groups or home-based semistructured interview) Lacey et al. (2009) identified multiple obstacles
to concordance and suggested that helping patients understand the
consequences of non-concordance may help to establish motivation
from the outset. Furthermore, by tailoring education to the individual
according to age and lifestyle, specific adherence issues would be
targeted and overcome in an appropriate, patient centred manner.
Examining education as a tool among ethnic minority communities,
Cross et al. (2009) identified exemplars of young African-Caribbean
men with severe disease who felt they had acquired considerable
glaucoma-related knowledge and skill over time. Developing a
partnership relationship with these young ‘experts’ was highlighted
as an important priority in raising awareness, as well as instilling
hope in patients at a similar life-stage by increasing confidence in
treatment to preserve sight, challenging worst-case scenarios, and
encouraging compliance.
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Finally, Cook et al., (2010) undertook a randomised trial to ascertain
whether motivational interviewing for patients with glaucoma is
feasible in a busy US hospital ophthalmology clinic. The trial
demonstrated that motivational interviewing delivered by a glaucoma
educator in this setting was feasible and can be implemented with a
standardised training approach. In the small sample (n=8),
concordance was improved over a 6-month period.
5.1.3 Practitioner-patient relationships & treatment and care
Another key issue identified by research is the relationship between
the service provider (usually the ophthalmologist) and the patient:
poor relationships, lack of continuity, and lack of trust or mutual
respect appear to be associated with worse adherence to agreed
treatment plans (Claydon et al., 1998; Patel et al., 2006; Friedman et
al., 2008; Muir et al., 2009).
In an observational cross-sectional study by Nordmann et al.
(2010b), patients with primary open-angle glaucoma or ocular
hypertension completed a six-dimension compliance questionnaire.
Participants’ compliance profiles were defined by an electronic
monitoring device. Although somewhat confounded by the sampling
method used, and limited by lack of ethnicity data, the results
suggest a central role for the patient-physician relationship and
emphasised the need to consider how best to educate patients about
glaucoma and its treatment.
Stryker et al (2010) conducted in-depth interviews with 80 individuals
diagnosed with open-angle glaucoma, suspect glaucoma, or ocular
hypertension. The study examined the factors influencing glaucoma
treatment adherence with medication taking, prescription refills and
appointment keeping. The authors noted that adherence was worse
in those who felt that their eye doctors did not spend enough time
with them, or those who were less likely to ask their doctor
questions. Having a personal carer or supporter was important in
improving concordance.
In particular, in a USA setting, Muir et al. (2009) showed that when
age, gender, baseline visual field acuity and visual field status,
education level and literary status were considered, only race was
associated with less trust in the physician. “Caucasians” (White
Americans) expressed slightly higher levels of trust than nonCaucasians. There are no comparable data for the UK, although a
recent patient satisfaction survey for the NHS in which 4573 patients
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who consulted 150 different doctors in 27 practices across nine
primary care trusts, did show disparities in satisfaction between
minority ethnic groups and the white European majority (Salisbury et
al., 2010). Satisfaction, however, may not be the same as trust.
The review also identified a study indicating that clinician
competence may have an impact on poor adherence to follow-up or
non-compliance with initial referral. Scully et al. (2009) examined all
optometrist-driven referrals for glaucoma or suspect glaucoma
arriving at Moorfields Eye Hospital over a 4-month period. Forty-nine
per cent of referral letters were found to be of ‘acceptable’ quality, 7
per cent ‘ideal’ quality and the remainder classed as ‘fail'. The main
reason for failure was an omission of non-clinical information,
although 26 per cent of letters failed to include an optic disc
evaluation and 6 per cent failed to provide intra-ocular pressure
measurements.
The recent Annual Evidence Update (NHS Evidence, 2010)
published by the NHS Evidence ‘eyes and vision’ collection reports
an absence of evidence relating to inequality in glaucoma screening
and adherence and specifically draws attention to the publication of a
Cochrane review by Gray et al. (2009), entitled 'Interventions for
improving adherence to ocular hypotension'. In the review it is
reported that 'until more evidence is available we cannot recommend
any particular method'. The authors of the Annual Evidence Update
(NHS Evidence, 2010) conclude that more research is required; this
applies with greater force to issues relating to between-group
variance or inequality of outcome.
5.2 Diabetic Retinopathy
5.2.1 Diabetic Retinopathy screening
The major ‘intervention’ in relation to eye health and promotion of
regular checkups or screening, is the existence of the national
Diabetic Retinopathy Screening Service. It is underpinned by the
requirement for every NHS patient recorded as having diabetes to
undergo (or be offered) a set of defined assessments every year (UK
National Screening Committee 2009; Diabetes National Service
Framework).
Consequently, of all conditions under scrutiny, diabetic retinopathy
appears to be the issue best served by interventions to increase
uptake, partly on the back of the national priority given to diabetes,
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and the existence of a national diabetic screening retinopathy service
created as an earlier response to criticisms of uneven uptake and
missed cases (Scanlon 2008).
5.2.2 Factor affecting attendance at screening services
Despite its universal character and support by the national quality
standards framework, it is evident that there are significant variations
in uptake. People living in lower socio-economic groups or living in
areas of relatively higher deprivation have been shown to have
higher rates of non-attendance, as have both younger and older
patients (Gulliford et al., 2010a; Scanlon et al., 2008; Leese et al.,
2008). Long duration of diabetes has also been shown to be
associated with poor attendance at screening (Leese et al., 2008).
The impact on attendance of type and location of service, however,
is less defined. An early study of retinopathy screening services in
Tayside, Scotland (Lesse et al., 1993) found that compared with
diabetic patients in urban areas, those in rural areas were less likely
to attend a hospital based diabetic clinic, possibly reflecting issues of
accessibility to the screening centre. The authors thus concluded
that rural patients might benefit more from mobile screening units.
However, a more recent study in the same area (Leese et al., 2008)
indicated that distance (measured by travel time) between patients'
residence and site of retinal screening did not affect attendance.
Interestingly, uptake was considerably better at the static hospital
clinic compared with attendance at mobile units, despite the fact that
travel times to the mobile vans were shorter and deprivation (a
known factor for lower attendance) was higher in the area served by
the hospital clinic. One explanation was the fact that retinal
screening in the hospital was combined with attendance for other
diabetes related clinics. Thus, patients attending the hospital may not
have needed to make a special trip. Combining appointments may
also serve to reinforce the important of attendance.
Although not directed affecting attendance, the issue of poor data
quality in relation to the characteristics of service users and in
particular non-attendance among at-risk populations, has been cited
as a potential barrier to identifying factors that influence nonattendance. A recent South London study of attendance at diabetic
screening indicated that over 75% attendees had no data on either
ethnicity or diabetes duration (Gulliford et al., 2010b). Thus, there is
clearly a need to address deficiencies in data collection if one is to
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understand fully the extent of the current problem and properly
evaluate initiatives to tackle issues.
5.2.3 Strategies to improve attendance at screening services
Two reports from the United States of America (Walker et al., 2008,
Jones et al., 2010) described how a limited telephone intervention
could improve significantly participation in retinopathy screening in a
minority, low-income population. Specifically, Jones et al., (2010)
demonstrate that use of ‘ethnically aware’ (matched, language
competent) peer educators using telephone follow-up, increased
uptake/adherence to DR screening among inner city Hispanic adults
(and Black people) across ‘race’ and language groups. The use of
telephone follow-up was significantly more effective than use of printbased approaches, but this was not a trivial exercise (i.e. was
expensive and complex to arrange). The authors reported that their
results demonstrate the difficulties and challenges of conducting a
tailored telephone intervention to improve rates of screening in an
underserved, diverse urban community.
There is no doubt that interventions can improve uptake of DR
screening. This does not, however, mean that they will necessarily
reduce inequality or have the same level of benefit for marginalised
populations whether described in terms of age, poverty or ethnicity.
In a Systematic Review of the effectiveness of interventions aimed to
increase retinal screening among people with diabetes Zhang et al.
(2007) reviewed forty-eight studies, including 12 randomized
controlled trials, with a total of 162,157 participants. They found that
in nearly every case, increased uptake was reported, with significant
effects shown in four out of five RCT studies that focused on patient
interventions. Trials focused on the healthcare system also showed
an increase in take up. The report states that increasing patient
awareness of diabetic retinopathy, improving provider and practice
performance, and improving healthcare system infrastructure and
processes, can all significantly increase screening for diabetic
retinopathy. However, they caution that these results may not be
universally generalisable, and recommend that further research
should explore strategies for increasing the rate of retinal screening
among diverse or disadvantaged populations as well as the
economic efficiency of effective interventions.
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5.2.4 Learning from initiatives focusing on diabetes
A large randomised controlled trial which evaluated the use of link
workers to encourage dietary and lifestyle changes in South Asians
with diabetes recorded significant improvements at two years in
diastolic and mean arterial blood pressure but not in HbA1c (O’Hare
et al., 2004; Bellary et al., 2008). Unfortunately, the critical factor in
terms of reducing retinopathy in diabetes is glycaemic control
(HbA1C), rather than cardio-vascular risk (blood pressure).
A systematic review of primary care interventions on glycaemic
control and cardio vascular risk factors targeted at minority ethnic
populations considered a total of 2,565 participants from 9 separate
studies based in primary care practices. This concluded that case
management in primary care (with specialist diabetes nurses,
dieticians and community health workers) can improve HbA1c levels
and cardiovascular risk factors, and that use of link workers from the
minority ethnic community can lead to improved cardiovascular risk
factor control (Saxena et al., 2007).
Conversely, another Cochrane review found no significant
differences in HbA1c levels between individual patient education and
usual care for a general population with type 2 diabetes (Duke et al.,
2009). Recent work by Hawthorne et al. (2010) who systematically
reviewed 11 trials involving 1,603 people, has identified evidence
that culturally appropriate health education for patients with type 2
diabetes from ethnic minority groups, resident in upper-middle or
high income counties can provide some improvement in glycaemic
control in the short to medium term. Patient knowledge improved at
all stages after intervention. Yet health education had no lasting
effect as the improvement was not significant 12 months later.
The main current focus in UK diabetes prevention relevant to this
review appears to be the present ‘Diabetes Community Champions’
programme (using Diverse Communities Officers employed by the
charity Diabetes UK). In this scheme leaders of local community
groups have been trained to raise awareness of type 2 diabetes, and
provided with culturally appropriate (and translated) materials.
Groups so far covered by the scheme include members of Black
(African and Caribbean), South Asian and Turkish communities and
now Champions from Polish and Latin American backgrounds have
also been trained. Information disseminated includes reference to
the potential of diabetes to affect eyesight, and at least one (African
Caribbean) Champion is Visually Impaired. At present, however, no
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results are available to assess the impact of this intervention
although work in Haringey will be evaluated during 2011.
5.3 Age-related Macular Degeneration (AMD)
The treatment options for AMD are limited. There is no proven
therapy for 'dry’ AMD; although there is some evidence encouraging
improvement in diet (AREDS study, 2001; Tan et al., 2009). Other
groups (e.g. The London Project to Cure Blindness) are also
examining advancements in stem cell therapy.
The limited treatment options for ‘wet’ AMD include laser treatment
and now, more commonly, intraocular injected drugs; mainly
Ranibizumab (marketed as Lucentis) and Bevacizumab (Avastin,
approved by the EMEA and FDA for treatment of cancer and not for
ophthalmic use and so only being used off-label for intravitreal use in
AMD). However, it was not the remit of this review to examine
advancements in clinical treatments.
It has been suggested that eating a diet high in omega-3 fatty acids
(found in oily fish and some other foods) may reduce the risk of
developing AMD (Seddon et al., 2006; Swenor et al., 2010; Tan et
al., 2009). However, further evidence is required to confirm this
hypothesis before embarking on intervention trials.
The use of statins prescribed for control of cholesterol in reduction of
heart disease may also be effective, but evidence from currently
available RCTs was insufficient to conclude that statins have any
role in preventing or delaying the onset or progression of AMD
(Gehlbach et al., 2009).
Other studies (AREDS trial, 2001; Evans 2010) have suggested a
potential protective effect of multivitamin and antioxidant
supplements in the progression of advanced AMD. The AREDS trial
(2001) demonstrated a risk reduction of 25% in advanced AMD by
using a multivitamin formulation: Vit A, C, E and Zinc. A systematic
review of antioxidant supplements to prevent or slow down the
progression of AMD (Evans 2010) found there was evidence that
beta-carotene, vitamin C and vitamin E, and zinc supplementation
slowed the progression to advanced AMD and visual acuity loss in
people with signs of the disease (adjusted OR = 0.68, 95% CI, 0.530.87 and 0.77, 95% CI, 0.62-0.96, respectively). However, the review
drew heavily on the findings of the AREDS trial. The authors of both
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studies concluded that whilst people with AMD, or early signs of the
disease, may experience some benefit from taking supplements as
used in the AREDS trial, there is no evidence to support the use of
antioxidant vitamin supplements to prevent AMD.
Firm evidence for a beneficial dietary or supplementation strategy is
still awaited and there is as yet no evidence for differential effects in
ethnic groups, or by other sub-categories of population.
5.4 Cataract
For most people, cataract surgery can significantly improve their
vision but the pathway for accessing treatment may involve multiple
visits to different health professionals, and a long wait. A report by
the National Eye Care Steering Group, London, released in 2004
estimated that there might be more than 34,000 patients waiting over
three months for cataract treatment (Busby, 2004).
The review found no evidence of ‘early intervention’ in relation to
prevention of cataract, since referral for surgery only follows a
diagnosis of ‘visually significant’ cataract (i.e. established sight loss).
As such, the majority of papers located referred to treatment rather
than prevention — except insofar as smoking campaigns might be
relevant, but none of the reports on smoking reduction monitored by
the review referred to sight loss as an intended or measured
outcome.
One study by McNeil et al. (2004) did examine Vitamin E
supplementation on the development of cataract in a randomised
controlled study. However, their findings did not support the use of
vitamin E to prevent the development or to slow the progression of
age-related cataracts. Similar findings were reported in a study of
Age-related Cataract in a Randomized Trial of Vitamins E and C in
Men (Christen et al., 2010).
Although not examining interventions in relation to cataract
treatment, several groups have examined the causes of variation in
cataract presentation, identifying variations between countries
(Norregaard et al., 1997) and within different locations in the same
country (Desai, 1993; Goyal et al., 2004). Factors reported to have
an affect include age, gender, concentration and use of optometrists,
variations in surgical practices, variations in administrative practices
and social deprivation.
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Other studies have examined how changes to pre- and postoperative care might influence waiting times and satisfaction.
Kirkwood et al. (2006), in an Australian setting, described a nurse-led
pre-operative cataract assessment and post-operative care clinic to
evaluate the model in terms of access to care, safety, clinical
outcomes and patient satisfaction. Waiting times for both clinical
appointment and surgery were substantially reduced, while visual
ability was improved and patients reported high levels of satisfaction.
In a similar study in a UK setting, Rose et al. (1999) reported that a
nurse-led pre-operative assessment of patients at a peripheral
ophthalmic clinic immediately following diagnosis of cataract was not
only safe and cost-effective, but preferred by patients compared to a
separate return appointment for pre-operative assessment. These
papers did not examine the impact on higher-risk groups or potential
inequalities.
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6 Conclusions
The majority of studies into inequality in eye health have
concentrated on the needs of those found to have sight loss, and the
maintenance of their quality of life, or on treatments, rather than on
the potential to prevent sight loss through earlier detection. Very few
have examined the implications for more marginalised or higher-risk
groups. It is true that models of good practice that work for the
majority, will usually have the potential to lead to some improvement
in these groups, but it is also the case that studies of health
outcomes (across the field of health inequality in respect of all
diseases and conditions) consistently report that poor, deprived or
marginalised groups, older people with additional impairments or
lacking social support, and minority ethnic groups, gain relatively less
from such changes. A ‘rising tide’, in other words, does not float all
boats equally. These reports consistently argue for targeted
interventions and specific approaches. In nearly all interventions,
there have been greater gains achieved by those with greater socioeconomic advantage, or belonging to the white majority ethnic group,
although the evidence on age is less clear, and rarely reported.
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7 Recommendations
Previous research consistently points towards targeted interventions
and specific approaches. However, they often have differing levels of
evaluation, and frequently these are poorly reported. Despite this,
certain interventions recur as recommendations from research, or as
the focus of short-term projects expected to bring about change.
Based on the existing research evidence base the following
recommendations are proposed for the development of intervention
strategies to address inequalities in eye health care:
1. Awareness raising and information provision in targeted
media campaigns
The evidence indicates that it is necessary to identify and use media
specific to the at-risk group of interest. General press or media
releases, which do not use role models or examples (and cultural
signifiers) aimed at specific sub-populations, are unlikely to meet this
need and campaigns should be explicitly targeted at risk groups
See: Baker & Murdoch, 2004; 2008; Cross et al., 2005; Thornton et
al., 2005; Wormald et al., 1994
2. The use of Eye Health Champions
This approach seems to be the most likely to offer potential to
succeed. The continuing funding of such projects suggests that
process studies and practitioners at least regard them as viable.
Properly designed research should include formal evaluation which
follows the intervention to a point where measurable outcomes have
been reported: this will require client monitoring by service providers
No published evaluations. See: Cross et al., 2009; O’Hare et al.,
2004, Saxena et al., 2007
3. Motivational Interviewers or other forms of Personal Support
Reports were located which focused on strategies leading to the
training or ‘empowerment’ of service users. While promising, few
were able to show clear clinical outcomes although they all state that
the processes involved were popular among both practitioners and
patients. ECLOs (Eye Care Liaison workers based in eye clinics,
sometimes employed under other job titles), whose primary role is to
support people with newly diagnosed sight loss, might also play a
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significant role in supporting those newly diagnosed with sightthreatening conditions in a more preventive/ protective role.
See: Cook et al., 2010; Hawthorne et al., 2008; Lacey et al., 2009
4. Transparent Care Plans
It is clear from research that many service users, especially those
who are older, less well educated, or from non-English-speaking
backgrounds, find it difficult to follow care instructions and may not
understand or even know the name of their condition (low health
literacy). There is no agreed measure for this, and no clear evidence
of effectiveness of such approaches. More research is required.
See: Gray et al., 2009; Lacey et al., 2009; Stryker et al., 2010; Tsai
et al., 2007
5. Professional Development and Training of Service delivery
staff
There remain shortcomings in the ability of service delivery staff to
recognise need or to support members of at-risk groups properly to
access and adhere to programmes of preventive eye health. This is
sometimes referred to as ‘cultural competence’, and refers not only
to ethnicity but other aspects of lifestyle. Staff training is necessary –
with monitoring of changes in practice and better recording and
monitoring of users, in terms of ethnicity and other characteristics to
enable a better picture of service uptake and inequality.
See: Atri et al., 1997; Busby 2004; Goyal et al., 2004; Nordmann et
al., 2010; also Day et al., 2010; Nazroo 2005
6. Structural Changes in service delivery
A number of reports drew attention to weaknesses in systems of
service delivery, including data recording and monitoring, and
tracking of patients along care pathways, some of which were not
well designed for vulnerable users. There is evidently scope for
improvement here, although no published papers report interventions
that demonstrate effects on inequality.
See: Day et al., 2010; Gulliford et al., 2010; Leese et al., 1993 (rural
areas); Scully et al., 2009; Zhang et al., 2007
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References
1. Access Economics (2009) Future sight loss UK (1): The
economic impact of partial sight and blindness in the UK adult
population. Report prepared for RNIB by Access Economics Pty
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