Determining the information needs for prevention of vision loss strategies in Canada

Public Health Task Force for Vision and Ophthalmology*

T he changing demographics in Canada suggest that in the coming years there will be substantial

increases in the demand for eye care services (treat­ment and rehabilitation). It is important to document the information needs so that relevant agencies at a local, provincial and national level can focus attention more effectively.

Last March, Health Canada supported a meeting of key people from throughout Canada who are involved in aspects of population health in eye care. The group was multidisciplinary, including ophthalmologists, optometrists, epidemiologists, rehabilitation special­ists, social scientists and health policy planners. The primary objective of the meeting was to generate the key information needs of eye health strategies for the coming decade. Attention was given to cataract, glau­coma, age-related macular degeneration (AMD) and diabetic retinopathy.

CATARACT

Information needs for prevention of vision loss

In US studies cataract has been found to be the second-leading cause of blindness in the community and the leading cause of blindness in the nursing home population. In Canada the average waiting time for surgery varies considerably, and it is likely that lengthy waiting times lead to a substantial burden of decreased vision and quality of life from cataract across the coun­try. A better understanding of the burden of vision-

*The members of the Task Force are listed at the end of the article.

Accepted for publication June 12, 2000

Reprint requests to: Dr. Paul Courtright, BC Centre for Epidemiologic and International Ophthalmology, University of British Columbia, St. Paul's Hospital, 1081 Burrard St., Vancouver BC V6Z 1Y6; fax (604) 806-8058; pcourtright@providencehealth.bc.ca

Can J Ophthalmol 2000;35:255-7

Determining information needs

related decreased quality of life due to cataract is need­ed. Populations for whom the access to cataract surgery is felt to be particularly difficult are nursing home res­idents, members of visible minorities and geographi­cally isolated First Nations peoples. Interestingly, the tremendous success of modem cataract surgery in pre­venting vision loss has also decreased awareness of the huge burden of visual impairment alleviated by cata­ract surgery. A projection of cataract surgery needs over the next 5, 10 and 20 years would allow us to strategically plan and advocate access to this effective intervention. There are concerns about the escalating costs of new technology for cataract surgery, which may not necessarily offer any improvement in surgical outcomes. In fact, these technologies may limit the number of operations that can be provided in the pub­lic sector by exhausting budgetary allowances.

Summary recommendations

Information is needed to: • Provide a projection of needs for cataract surgery

over the next 20 years and develop some estimate of disability prevented and cost utility of cataract surgery.

• Better understand and monitor on an ongoing basis the burden of disease from cataract experienced by Canadians waiting for cataract surgery.

• Establish standards for health technology assess­ment in ophthalmology, particularly as pertains to cataract surgery, to ensure that the effectiveness and cost-effectiveness of new technologies is established before their widespread adoption.

GLAUCOMA

Information needs for prevention of vision loss

The amount of blindness from glaucoma that could be prevented by applying available technology optimal­ly is between 40% and 70%. In studies in the United States, Holland and Australia, 50% of cases of glauco­ma were undiagnosed. Compliance is a major difficulty

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in comparing treatment effectiveness between studies. Although at present no satisfactory method exists for screening of early glaucoma, the sensitivity and speci­ficity of current diagnostic modalities are extremely good for more advanced disease. Our current tools for measuring the progression of the disease are imprecise, and improving the precision oftechniques for monitor­ing glaucoma could greatly assist management of the disease. Despite difficulties with defining the disease, a great deal is known about the epidemiology of open­angle glaucoma; however, the determinants of pro­gression and the natural history of open-angle and angle-closure glaucoma, particularly "blinding glau­coma," are very poorly understood.

Summary recommendations

Information is needed to: • Develop a better understanding of the natural

history of and risk factors for progressive glaucoma, particularly blinding glaucoma, with an aim to better target high-risk groups for screening and aggressive treatment.

• Characterize the reasons for underdiagnosis of glaucoma and poor compliance with treatment (examine population awareness, utilization of period­ic ocular examinations, patient education and health behaviours).

• Develop an adequate framework for screening and improved methods for monitoring glaucoma.

AGE-RELATED MACULAR DEGENERATION

Information needs for prevention of vision loss

The Canadian population is aging, and research is needed on how this demographic shift will affect the prevalence and incidence of AMD. Information is also needed to determine what effect AMD will have on eye care resources over the next 10 to 20 years. Awareness of AMD may be different for the different forms (wet and dry), and the effect of these two con­ditions on vision loss is not understood by those who provide non-ophthalmic health care to elderly people. More information on risk factors is needed, including the genetic predisposition, so that patients at high risk can be identified earlier. In terms of management, the best we can offer for most patients with dry AMD is low-vision aids. Access to low-vision and rehabilita­tion services needs to be evaluated and promoted so that the potential effect of these services can be as-

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sessed. The coming treatments are extremely expen­sive: drug costs nationally for photodynamic treat­ments may reach $100 million over the next year.

Summary recommendations

Information is needed to: • Improve awareness programs: only 2% of the

Canadian population know about AMD. Programs are needed to educate family physicians, vision care workers, nurses and the general population about the disease. Specific efforts are needed to publicize the availability of low-vision services and newer treat­ments for AMD.

• Improve access to service: low-vision services and rehabilitation are the mainstay of AMD manage­ment at present. The access to and effectiveness of these services need to be evaluated.

• Improve therapies: new treatments will become available over the next couple of years. These treat­ments will likely be very expensive for both the patient and the federal government. They may also tax the medical system from a human resource perspective. Studies are needed to evaluate the effect of these new technologies on the health care system in general. Rec­ommendations are also needed about qualifications for those who interpret angiograms and perform treat­ments for AMD.

DIABETIC RETINOPATHY

Information needs for prevention of vision loss

At present there is little published information about the prevalence of diabetic retinopathy in Canada and in Canadian ethnic populations. Moreover, there is no information about risk factors for the progression of the disease in Canadians. In particular, how many people with insulin-dependent and non-insulin-dependent dia­betes mellitus are there in Canada and, specifically, in aboriginal populations (prevalence ranges from 2% to 17% )? What are the standards for diagnosis and treat­ment of diabetic retinopathy, and are the paradigms of care changing? Do they differ for specific populations? Most of the research in this area has involved white US populations. Efforts are needed to carry out some of this research in specific Canadian populations. Tele­medicine may provide a new approach to diabetic ret­inopathy and may be one way of answering some of these questions. Who will provide screening care and make policy decisions about screening care? Aware-

ness of and education about diabetic retinopathy are both very important for patients and care providers. Knowledge about the disease needs to be passed on to general practitioners, emergency physicians and other practitioners. There is an education gap that needs to be addressed. There is also a need to collect and use data, possibly in partnership with the National Diabetes Surveillance System.

Summary recommendations

Information is needed to: • Define the magnitude of the problem of diabetic

retinopathy, especially in aboriginal Canadian popula­tions, in whom the prevalence of diabetes is high. As well, broad determinants of health need to be evaluat­ed as risk factors for diabetic retinopathy - again, primarily in populations that are known to have a high prevalence of diabetes.

• Create awareness programs: education is needed to alert populations at high risk for diabetic retinopa­thy about known risk factors for progression, specifi­cally, glycemic control, hypertension, lipid levels, smoking and nephropathy.

• Improve access to services: a coordinated ap­proach should be sought for screening for diabetic retinopathy and, at the same time, addressing risk factors for the disease in high-risk populations. Tete­medicine holds great promise as a means of address­ing information needs about the prevalence of and risk factors for diabetic retinopathy. Telemedicine projects need to be developed with careful study design so that the resulting programs use validated techniques. Evaluations, including cost-effectiveness analyses, of such programs should be carried out simultaneously.

CROSSCUTTING THEMES

Several themes are relevant to all four diseases and should be included in considerations of prevention of vision loss from a population health perspective.

• Society, culture and the eye health of populations: information is needed on the burden of vision-related disability among Canadians. This should include an estimate of the cost that is attributable to vision loss in this country.

• Health care services and health care systems: in­formation is needed on the obstacles to the use of vision

Determining information needs

care services by patients, particularly among high­risk groups (who have the most to gain from sight­preserving interventions). An understanding of the distribution of eye care services provided in Canada would be valuable. Methods of delivering care cost­effectively to remote populations and new methods of delivering eye care more effectively in urban and rural Canada should be explored.

• Applied clinical and basic biomedical research: there is a need to foster the development of standards for health technology assessment to ensure that the effectiveness and cost utility of new innovations are demonstrated before they are widely adopted. A size­able portion of the burden from glaucoma and AMD cannot be adequately prevented or treated with exist­ing therapies; support for basic biomedical research needs to be strengthened.

For further information, contact one of the members of the Task Force. <P--

Task Force members: Helene Boisjoly, Universite de Montreal, boisjoly@hmr.qc.ca; Jean Real Brunette, Vision Health Research Council, brunette@courrier.usherb. ca; Ralf Buhrmann (Rapporteur), University of Ottawa, rbuhrmann@ottawahospital.on.ca; Paul Courtright (Chair), BC Centre for Epidemiologic and International Oph­thalmology, Vancouver, pcourtright@providencehealth. bc.ca; Alan Cruess, Queen's University, Kingston, Ont., cruess@post.queensu.ca; Gerrard Grace, Canadian National Institute for the Blind, Toronto, graceg@east.cnib.ca; Jacques Gresset, Universite de Montreal, gressetj@ere. umontreal.ca; Janet Hanevelt, Canadian National Institute for the Blind, Vancouver, jhanevelt@bc.cnib.ca; Bill Hodge (Rapporteur), University of Ottawa, whodge@ ottawahospital.on.ca; Carol Kauppi, Canadian National Institute for the Blind, Toronto, kauppic@cnib.ca; Ray LeBlanc, Dalhousie University, Halifax, rpleblan@is. dal.ca; David Maberley (Rapporteur), University of British Columbia, Vancouver, david_maberley@hotmail.com; Phillip Mickelson, Health Canada, Ottawa, phillip_ mickelson@hc-sc.gc.ca; David Persaud, Dalhousie Univer­sity, Halifax, d.persaud@dal.ca; Barbara Robinson, Uni­versity of Waterloo, Waterloo, Ont., robinson@sciborg. uwaterloo.ca; Lyn Sibley, BC Centre for Epidemiologic and International Ophthalmology, Vancouver, lmsibley@ providencehealth.bc.ca; Martin Steinbach, Vision Health Research Council, mjs@yorku.ca; Linda Studholme, Canadian National Institute for the Blind, Toronto, studhol@cnib.ca; and Greg Taylor, Health Canada, Ottawa, gregory _taylor@ hcsc.gc.ca.

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