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:RNIB105 Judd StreetLondon, 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: mrdj@dmu.ac.uk

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........................................................................i1 Introduction............................................................................12 Methods.................................................................................23 Risk factors for preventable sight loss...................................5

3.1 Ethnic origin and Sight Loss.........................................53.2 Socio-economic deprivation and Sight Loss................63.3 Age and Sight Loss......................................................73.4 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..................................................................135.1 Glaucoma...................................................................135.2 Diabetic Retinopathy..................................................185.3 Age-related Macular Degeneration (AMD).................225.4 Cataract......................................................................23

6 Conclusions.........................................................................257 Recommendations...............................................................26References.................................................................................28

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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 socio-economic 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 socio-economic 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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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 at-risk 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

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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.

RecommendationsBased 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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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 sight-threatening conditions in a more preventive/ protective role.

4. Transparent Care PlansIt 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 deliveryA 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.

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1 IntroductionIn 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 MethodsThe 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 comparedCRD CRD

Description(CRD 2009)

Comment RatingNHSE e&h

Evidence Review Grade

- Cochrane and similar Systematic Reviews

Strong

1 Experimental studies e.g. RCT

Few in number; have to meet other quality criteria

A1 Strong

2 Quasi-experimental study

Few in number; have to meet other quality criteria

A2 Strong

3a Controlled Design: Cohort Studies

Ranking depends on strength and design quality

B1 Strong

3b Controlled Design: Case Control Studies

Ranking depends on strength and design quality

B2 Fit for Purpose

4 Observational Studies (no controls)

Ranking depends on strength and design quality and quality of description and insight into process

C 1-2 Fit for Purpose

5 Expert Opinion based on research or consensus

May be upgraded if philosophically well-founded, raises significant issues for practice

D1 Acceptable

- Descriptive or Demotic argument

Seldom adds to overall knowledge

D2 Weak

- Use of stereo-type or poor categorisation

Needs to be exposed or noted if contributes to Bad practice

E Excluded but may be noted.

- Practice Literature and narrative evidence reviews

Dependent on methodology

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3 Risk factors for preventable sight loss3.1 Ethnic origin and Sight LossThere 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 LossThere is a growing consensus of opinion that, as with most other health conditions, there is an association between poverty or socio-economic 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 socio-economic deprivation, were associated with poorer visual acuity at presentation in Exudative AMD.

Fraser et al. (2001) suggested the association between socio-economic 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 LossThere 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 lossA 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 nine-times 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, 1.07-5.15); 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 symptom-driven. 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 GlaucomaRecent 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 educationA 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 health-seeking 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 & careIn 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 semi-structured 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 careAnother 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 non-Caucasians. 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 non-attendance. 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 print-based 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, 0.53-0.87 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 CataractFor 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 post-operative 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 socio-economic 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 RecommendationsPrevious 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 sight-threatening conditions in a more preventive/ protective role.

See: Cook et al., 2010; Hawthorne et al., 2008; Lacey et al., 2009

4. Transparent Care PlansIt 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 deliveryA 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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