Canadian research contributions to low-vision rehabilitation Joshua C. Teichman, MD, Samuel N. Markowitz, MD, FRCSC ABSTRACT • RÉSUMÉ
Background: Demographic changes likely to occur in the near future and the need for planning to address them are behind the urgent drive to assess present-day provision and utilization of low-vision rehabilitation (LVR) services in the community. Perhaps even more important is the assessment of supporting research work in this field of health care. The purpose of this study, therefore, was to investigate the current involvement of researchers in Canada in the elucidation of the LVR sciences. Methods: A PubMed search of the MEDLINE database was performed. Publications were identified according to preset criteria and search key words pertinent to various aspects of LVR sciences. Data were collected on the corresponding authors and their affiliations, type of journal and type of study performed, and reported outcome measures. Results: Approximately 1500 papers were reviewed, and 131 that met the preset criteria were included in the study. Medical doctors published most papers (48.1%), followed by optometrists, those with PhDs, occupational therapists, and others; most of the papers (44.3%) were published in ophthalmology journals. Research was performed mainly at Canadian universities (84%), and the findings were published in the last 3 decades. The studies largely concentrated on rehabilitation services and other aspects of vision rehabilitation (55%), whereas studies focusing on the evaluation of tools used for assessment of either visual functions or functional vision were in the minority (45%). Interpretation:The majority of research activity in Canada is university based and involves the medical profession in a leading role, thus affording LVR the appropriate medium for promotion and development of a multidisciplinary approach to outstanding research issues. Only a fraction of current research in LVR (12.2%) deals with outcome measures of the therapeutic interventions aimed at restoring functional vision. Contexte : Les changements démographiques attendus dans un proche avenir et le besoin de planification pour y faire face accentuent l’urgence d’évaluer les capacités contemporaines de prestation et d’utilisation des services de réadaptation visuelle (SRV) de la collectivité. Il est peut-être encore plus important d’évaluer le soutien à la recherche dans ce secteur des soins médicaux. La présente étude a donc pour objet d’examiner la participation actuelle des chercheurs du Canada dans les sciences cherchant à élucider les problèmes de la basse vision. Méthodes : Une recherche PubMed dans la base de données MEDLINE a permis d’identifier les publications selon des critères préétablis et des mots-clés pertinents aux divers aspects scientifiques des SRV. Les données recueillies ont porté sur les auteurs correspondants et leurs affiliations, les types de journaux et d’études ainsi que la mesure des résultats obtenus. Résultats : Parmi les quelque 1500 articles examinés, 131 répondirent aux critères établis et furent retenus pour l’étude. Les docteurs en médecine en avaient publié la plupart (48,1 %), suivi d’optométristes, de PhD, d’ergothérapeutes et autres; la plupart des articles (44,3 %) furent publiés dans les journaux d’ophtalmologie. La recherche a été effectuée principalement dans les universités canadiennes (84 %) et les résultats avaient été publiés au cours des 3 dernières décennies. Les études se sont concentrées surtout sur les services de réadaptation et d’autres aspects de la réadaptation visuelle (55 %), alors que les études portant sur l’évaluation des instruments d’appréciation des fonctions visuelles ou de la vision fonctionnelle étaient minoritaires (45 %). Interprétation : La recherche canadienne se fait majoritairement dans les universités et la profession médicale y occupe un rôle principal, procurant ainsi aux SRV le moyen approprié pour promouvoir et développer une approche multidisciplinaire des questions non encore élucidées. Une fraction seulement de la recherche actuelle sur les SRV (12,2 %) porte sur la mesure des résultats des interventions thérapeutiques visant à restaurer la vison fonctionnelle. From the Low Vision Service (University Health Network Hospitals), Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto, Ont. Originally received Sep. 8, 2007. Revised Jan. 27, 2008 Accepted for publication Feb. 11, 2008 Published online July 8, 2008
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Correspondence to Samuel N. Markowitz, MD, 1225 Davenport Rd., Toronto ON M6H 2H1;
[email protected] This article has been peer-reviewed. Cet article a été évalué par les pairs. Can J Ophthalmol 2008;43:414–8 doi:10.3129/i08-065
Canadian research in LVR—Teichman & Markowitz
T
he demographic profile of Canada is changing rapidly in line with the changes already in progress in the Western world. Demographic projections indicate that Canada’s population is aging, and there is evidence of an increase in the incidence of conditions, such as agerelated macular degeneration (AMD), that produce vision impairments and result in low vision. Canada faces a significant aging of its population as the proportion of seniors increases more rapidly than all other age groups. In 2001, 1 Canadian in 8 was aged 65 years or over. By 2026, 1 Canadian in 4 will have reached the age of 65.1 In 2001, Statistics Canada showed that 610,950 Canadians identified themselves as having seriously impaired vision, which was defined as a difficulty of reading ordinary newsprint or clearly seeing the face of someone from a distance of 4 m.2 It is expected that the annual incidence of cases of vision impairment will be double that of the current rate by the year 2025. In the United States a recent study estimates that by the year 2020 there will be 4.08 million Americans suffering from low vision, which is an estimated 70% more than those identified as such in the year 2000.3 Given the demographic changes due to occur in the near future in Canada and the need to plan for the expected increase in the demand for services, it becomes critical to assess the present-day provision and utilization of low-vision rehabilitation (LVR) services available in the community, as well as the supporting research in this field of health care. Data available with regard to the provision and utilization of the LVR services available in Canada are incomplete and originate mostly from Canadian National Institute for the Blind (CNIB) sources based on CNIB clients accessing the services provided. There are no reports in the literature regarding research efforts in Canada aimed at supporting clinical LVR. Nevertheless, information from professional sources suggests that research in LVR is common and quite widespread in Canada, although it is not recognized as such. The purpose of this study, therefore, was to survey and publicize the current involvement of researchers in Canada in the elucidation of the LVR sciences. METHODS
Our study was designed as a review of published work in the English language based on the use of Internet search engines. No examination was performed on how many different researchers or laboratories accounted for the range of publications selected. A PubMed search of the MEDLINE database without time limits was performed using a list of key words, as detailed in Appendix 1 (available online). Publications were identified according to preset criteria, detailed below, and search key words pertinent to various aspects of LVR sciences extracted from a review paper on LVR.4 The protocol called for all key words in a given section of Appendix 1 to be searched individually as both a key word and a MeSH heading. These results were then combined
with the OR function to create a group of papers termed a section. Six sections are identified in Appendix 1. The sections were then combined as follows: sections 1 AND 6; sections 2 AND 6; sections 3 AND 4 AND 6; sections 4 AND 5 AND 6. Primary selection was based on the titles and abstracts of the articles listed by the search engine. Articles included in the study were those that addressed questions relevant to aspects of vision rehabilitation, such as residual visual functions, residual functional vision, the epidemiology of vision loss, the impact of vision loss on the individual and on society, associated impairments in addition to vision loss, and vision rehabilitation devices and training. Excluded were articles with an emphasis on surgical and medical remedies for visual impairments. Only work done at Canadian institutions was included in the study. If the first author’s degree, field of practice, or location was not listed in the article, a PubMed search was performed to obtain this information. If the information was unavailable, CINAHL, EMBASE, and Google search engines were used. If pertinent articles were found during such a search, these articles were used in the review; however, a systematic search of CINAHL, EMBASE, and Google was not performed. As this study focused on Canadian researchers, we considered a paper to be Canadian if the first author was affiliated with a Canadian site, as evidenced by the aforementioned searches. All relevant articles available online through the University of Toronto and the University of Western Ontario proxy servers were downloaded, and all articles available in print or through the archives of the University of Western Ontario were retrieved. After the search the articles were reviewed and tabulated with respect to the key words listed in Appendix 1 and the authors’ field of practice. A qualitative evaluation with regard to author and topics covered was produced in graph format. Data were collected on the qualifications of the corresponding author (MD, OD, PhD, OT, other); details of institutional affiliation of the author within a university department, community clinic or the CNIB; scope of the journal (ophthalmology, optometry, other); year of publication; and type of study (epidemiological, methodological, impact of impairment on individual or society, assessment of tools for either visual function or functional vision rehabilitation). Data were also collected on the reported outcome measures for the studies on visual function (visual acuity, visual fields, refractive errors, color vision, contrast sensitivity, oculomotor functions, binocularity), on functional vision (reading, driving, visual attention, orientation and mobility), on rehabilitation services, and on “other.” Both descriptive and qualitative statistical analysis of the data was performed. RESULTS
Out of approximately 1500 papers reviewed 131 met the preset criteria and were included in the study. Medical CAN J OPHTHALMOL—VOL. 43, NO. 4, 2008
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Canadian research in LVR—Teichman & Markowitz doctors published 63 of the 131 papers (48.1%), followed by optometrists (30, 22.9%), researchers with PhDs (17, 13.0%), occupational therapists (10, 7.6%), and others (11, 8.4%) (Fig. 1).The majority of papers (58) (44.3%) were published in ophthalmology journals, 30 (22.9%) were published in optometry journals, and the remaining 43 (32.8%) were published in other journals (Fig. 2, Table 1). All articles were published in the last 3 decades, 91 (69.5%) in the last 17 years. Most research work was performed at Canadian universities (84%), the remaining work being done in community centers (6.9%) and the CNIB (9.1%) (Fig. 3). A large number of papers focused on the evaluation of tools used for assessment of either visual function or functional vision (44, 33.6%). Wellknown and accepted assessment tools were used in the selected articles in line with research standards accepted in the United States and elsewhere internationally. The
Fig. 1—Number of papers by degree held by first author. (1, MD, doctor of medicine, n = 63; 2, OD, doctor of optometry, n = 30; 3, PhD, n = 17; 4, OT, occupational therapist, n = 10; 5, other, n = 11.)
remaining papers concentrated on the impact of the impairment either on the individual or on society (38, 29.0%), methodology (17, 13.0%), outcomes of rehabilitation interventions (11, 8.4%), and epidemiology (21, 16.0%) (Fig. 4). Outcome measures reported upon dealt with the various visual function measurements (43, 32.8%), followed by outcome measures on rehabilitation services (37, 28.2%), and then reports on other outcome measures (35, 26.7%) (Figs. 5 and 6). INTERPRETATION
The demographic changes due to occur in the near future and the need for planning to address them are behind the urgent drive to assess the present-day provision and utilization of LVR services in the community and evaluation of supporting research activities. Visual impairment causes difficulties with everyday living, hampering activities previously taken for granted, such as dressing, eating, writing, traveling from place to place, and communicating with others. In this respect, the annual toll of major adult eye disorders, visual impairment, and blindness on the U.S. economy alone is estimated at $51.4 billion.5 A consensus is emerging that the modern LVR model is a multidisciplinary endeavor responsible for providing assessment, prescribing devices, and conducting training and therapy sessions.6,7 This model recognizes the value of the multidisciplinary team approach and the role and responsibility of all team members in the provision of and referral for care. The consensus for this model is that the ultimate goal of LVR is restoration of functional vision acceptable to the patient. Within the framework of the model, ophthalmologists and optometrists serve as the lowvision clinician performing the low-vision examination. In this role, which is a critical component of the LVR service, prescriptive glasses, devices, technologies, and adaptive equipment are recommended. The low-vision clinician will
Table 1—Other journals surveyed
Fig. 2—Number of papers published in each type of journal. (1, ophthalmology journals, n = 58; 2, optometry journals, n = 30; 3, other, n = 43.)
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American Journal of Occupational Therapy American Journal of Physical Medicine and Rehabilitation Archives of Physical Medicine and Rehabilitation Brain Canadian Journal of Aging Canadian Journal of Occupational Therapy Canadian Journal of Public Health Disability and Rehabilitation Human Factors International Journal of Rehabilitation Research Journal of the American Geriatric Society Journal of Visual Impairment & Blindness Neuroimage Ophthalmic Epidemiology Pediatrician Perception and Motor Skills Quality of Life Research Scandinavian Journal of Caring Sciences Scandinavian Journal of Occupational Therapy Stroke Stroke Rehabilitation
Canadian research in LVR—Teichman & Markowitz also write orders for occupational therapy and will make referrals to low-vision therapists, orientation and mobility specialists, and vision rehabilitation teachers. These specialists provide direct LVR service to the patient. The amount and type of therapeutic services provided depend on the needs of the specific patient at any given time. Therapy providers and low-vision clinicians work together to ensure that the therapy provider with the needed skill set provides the necessary services to the patient and that the patient receives the appropriate level of intervention to secure an optimal outcome. Although the practice of LVR has deep roots in Europe and North America, modern LVR is a relatively new phenomenon within the rehabilitation community and in ophthalmology. The largest impetus to the advent of modern LVR is research work that took place during the last 3 decades and that set a new foundation for LVR practice based on new, solid, scientific findings. Past, present, and future research work in LVR also carries great promise and ensures that clinical LVR can meet the demands and the challenges presented to society by the baby-boomer generation. Hence, it is important to assess research activities in LVR
Fig. 3—Institutional origins of papers. (1, University of Waterloo, n = 27; 2, University of Toronto, n = 29; 3, Montréal universities, n = 22; 4, University of British Columbia, n = 17; 5, other universities, n = 15; 6, community clinics, n = 9; 7, CNIB, n = 12.)
Fig. 4—Paper classification according to research focus. (1, epidemiology; 2, methodology; 3, impact of disability on individual and society; 4, assessment of tools for visual function rehabilitation; 5, assessment of tools for functional vision rehabilitation; 6, outcomes of rehabilitation interventions.)
in Canada. The picture portrayed by our research is both encouraging and worrisome. Despite the fact that optometrists as a group have the longest tradition of practicing LVR, physicians (mostly ophthalmologists) form the largest group of researchers in LVR (48.1%) in Canada, almost as many as those with ODs and PhDs combined, indicating a serious interest and involvement in LVR. Thus, most research papers were published in ophthalmology journals (44.3%) with optometry journals following second. It is noteworthy that papers were published in the ophthalmology and optometry journals with the highest impact factors. Although the targeted audience was those readers with an interest in LVR, the fact that papers dealing with LVR issues were published in so many and such varied journals afforded LVR a broad exposure to the scientific community. Another result from our data is that the majority of research activity (84%) is university based and almost equally divided between Toronto, Montréal, and Waterloo.
Fig. 5—Outcome measures reported in papers. (1, visual function, n = 43; 2, functional vision, n = 16; 3, rehabilitation services, n = 37; 4, other, n = 35.)
Fig. 6—Detailed outcome measures reported in papers. (Visual function: 1, visual acuity, n = 12; 2, visual fields, n = 11; 3, refractive errors, n = 2; 4, color vision, n = 5; 5, contrast sensitivity, n = 3; 6, oculomotor functions, n = 7; 7, binocularity, n = 3.) (Functional vision: 8, reading, n = 5; 9, driving, n = 7; 10, visual attention, n = 3; 11, orientation and mobility, n = 1.) (12, rehabilitation services, n = 37; 13, other, n = 35.) CAN J OPHTHALMOL—VOL. 43, NO. 4, 2008
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Canadian research in LVR—Teichman & Markowitz The fact that the major universities in Canada are at the forefront of LVR afford this type of rehabilitation the appropriate medium for promotion and development of a multidisciplinary approach to outstanding research issues. The findings of our paper that LVR research is part of the work of ophthalmologists, optometrists, occupational therapists, those with PhDs, and many other professionals and that the vast majority of this kind of work is taking place at academic centers across the country are very encouraging; they suggest that scientific LVR is integrated well within the body of the health sciences and thus provides constant theoretical support to the clinical practice of LVR. Most worrisome is the finding that only a fraction of current research in LVR (12.2%) deals with the results of functional vision outcome measures, the agreed ultimate purpose of LVR. It indicates indirectly a paucity of therapeutic methods and devices in the field, as well as a lack of benchmarks and standards of preferred clinical practice patterns. It also strongly indicates that the entire field of LVR is still in its formative stage. This finding is further reinforced by the fact that most of the current research in LVR (76/131, 58%) investigates the impact of the impairment either on the individual or on society, its epidemiology, and LVR methodology. The introduction of the SmartSight initiative of the American Academy of Ophthalmology to Canada8 is timely and without doubt an innovative practice template that can help remedy many of the deficiencies in the delivery of clinical LVR services highlighted by this paper. Taking into consideration the demographic changes that will occur over the next 20 years, with an expected dramatic increase in the prevalence of age-related vision loss, there is a clear and urgent need to expand and reform the delivery of current LVR services, particularly with the advent of modern and comprehensive methods of LVR.7 Interdisciplinary collaboration among researchers, such as occurred in the recent projects developed by the CNIB (http://www.cnib.ca/en/research/current-projects), are essential in developing new standards for LVR clinical care and research in Canada. Expanding research efforts are necessary in order to develop new therapeutic methods and new devices for LVR. Most urgently, research must concentrate on evaluating outcome measures of therapeutic interventions aimed at restoring functional vision. Results from such research have always played and will continue to play a role in enlisting financial and government support for LVR. Results from such research are the foundation and the central concept of LVR. We, as professionals involved in LVR, can do more in this respect. In conclusion, the majority of research activity in Canada is university based and involves the medical profession in a leading role, thus affording LVR the appropriate medium
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for promotion and development of a multidisciplinary approach to outstanding research issues. Canadian research activity to a certain degree reflects the de facto situation prevailing worldwide in LVR today. Research activities indicate that modern LVR as a subspecialty is relatively new, since only a small fraction (12.2%) of the research deals with outcome measures of therapeutic interventions aimed at restoring functional vision. Indirectly, our findings indicate a paucity of therapeutic methods and devices in the field, as well as a lack of benchmarks and standards of preferred clinical practice patterns. Nevertheless, selective Canadian studies in LVR have an international impact and set new standards for research and practice of LVR worldwide. Results from this area of research carry the most weight with policy makers and will contribute the most to the development and establishment of LVR as a subspecialty; therefore, such research should be the focus of attention of all involved in LVR. Appendix 1 can be found on the CJO web site at http://pubs. nrc-cnrc.gc.ca/cjo/cjo.html. It is linked to this article in the online contents of the August 2008 issue.
REFERENCES 1. Health Canada. Canada’s Aging Population. Ottawa, Ont.: Minister of Public Works and Government Services; 2002. Available at: http://www.phac-aspc.gc.ca/seniors-aines/pubs/ fed_paper/pdfs/fedpager_e.pdf. 2. Statistics Canada. A Profile of Disability in Canada, 2001. Ottawa, Ont.: Ministry of Industry; 2001. Available at: http://www.sdc.gc.ca/en/cs/sp/sdc/pkrf/publications/research/ 2001-000123/page00.shtml. 3. Congdon N, O’Colmain B, Claver CC et al.; Eye Disease Prevalence Research Group. Causes and prevalence of visual impairment among adults in the United States. Arch Ophthalmol 2004;122:477–85. 4. Markowitz SN. Low vision rehabilitation. Ophthalmol Rounds 2003;2:1–4. 5. Prevent Blindness America. The Economic Impact of Vision Problems: the Toll of Major Adult Eye Disorders, Visual Impairment, and Blindness on the U.S. Economy. 2007. Available at: http://www.preventblindness.org/research/costofblindness.html. 6. MD Support. Low Vision Rehabilitation Delivery Model. 2007. Available at: http://www.mdsupport.org/lvrehab.html. 7. Markowitz SN. Principles of modern low-vision rehabilitation. Can J Ophthalmol 2006;41:289–312. 8. Jackson ML. Vision rehabilitation for Canadians with less than 20/50 acuity: the SmartSight model. Can J Ophthalmol 2006;41:355–61
Key words: low vision, vision rehabilitation, age-related macular degeneration