Evaluating strategies to address 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

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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: 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 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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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.

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 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

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 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.

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).

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 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: 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.

Table 1: Strength of Evidence: categories compared

|CRD |CRD Description |Comment |Rating |Evidence Review Grade |

| |(CRD 2009) | |NHSE e&h | |

|- | |Cochrane and similar Systematic Reviews| |Strong |

|1 |Experimental studies e.g. RCT |Few in number; have to meet other |A1 |Strong |

| | |quality criteria | | |

|2 |Quasi-experimental study |Few in number; have to meet other |A2 |Strong |

| | |quality criteria | | |

|3a |Controlled Design: Cohort |Ranking depends on strength and design |B1 |Strong |

| |Studies |quality | | |

|3b |Controlled Design: Case |Ranking depends on strength and design |B2 |Fit for Purpose |

| |Control Studies |quality | | |

|4 |Observational Studies (no |Ranking depends on strength and design |C 1-2 |Fit for Purpose |

| |controls) |quality and quality of description and | | |

| | |insight into process | | |

|5 |Expert Opinion based on |May be upgraded if philosophically |D1 |Acceptable |

| |research or consensus |well-founded, raises significant issues| | |

| | |for practice | | |

|- |Descriptive or Demotic |Seldom adds to overall knowledge |D2 |Weak |

| |argument | | | |

|- |Use of stereo-type or poor |Needs to be exposed or noted if |E |Excluded but may be noted. |

| |categorisation |contributes to Bad practice | | |

|- | |Practice Literature and narrative | |Dependent on methodology |

| | |evidence reviews | | |

Risk factors for preventable sight loss

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 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.

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 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 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: ) 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 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 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 ................
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