To date, the Montreal Barriers Study has been conducted in what might reasonably be considered an ideal environment for patients' awareness of and doctors' referral to vision rehabilitation services. Participants were recruited in the ophthalmology departments of large, urban, university-affiliated hospitals where the patient population is generally more highly educated, middle-class, and relatively well informed about medical and related services that are available in the city. This is a limitation of the study because a significant proportion of the general public does not fall into this category. Additionally, given that two of the four hospitals that were used as interview sites have a low vision clinic on the premises, the ophthalmologists whose patients were recruited for the study were well aware of the existing local facilities as well as the two large rehabilitation centers providing comprehensive service programs. Yet, despite these “ideal conditions,” only 54% of the study participants were aware of and had availed themselves of these services. Given these circumstances, it would be reasonable to suggest that the percentage would be lower elsewhere, as indicated by previous studies.
3,9 It remains to be determined whether these findings generalize to other countries, sites, or other health care systems. The cross-sectional data at the time of the interview indicated possible bias in referral patterns favoring more educated patients with a fairly advanced form of AMD. However, in phase II, it was found that at the time of first contact with the agency the majority of participants had only a mild acuity restriction.
A counterintuitive finding was that individuals living independently were least likely to be referred and to accept low vision rehabilitation. It may be possible that a fear of being considered incapable of living independently kept them from divulging any functional difficulties or, alternatively, that their seemingly high functional status deterred their ophthalmologists from suggesting that they might find assistive devices and services helpful in the management of their functional limitations. One-third of the participants indicated that they were unaware of vision rehabilitation services. They had not received a referral from their ophthalmologist and had not been otherwise informed that they were eligible to receive assistive devices, training in their use, and other interventions such as psychological counseling. The interesting finding in phase III of the study was that, even after such information was provided at the conclusion of their participation and after they were referred to a rehabilitation agency, only half of them actually followed up on the recommendation. Curiously, the other half joined the initial 13% of the study participants who were aware of or referred to rehabilitation services but chose not to make the initial contact with the agency. Clearly, there are barriers other than lack of knowledge that keep people from seeking and obtaining appropriate services. It should be made clear that, in the context of this study, financial cost is not one of these obstacles. In the province of Quebec, the low vision examination, the rehabilitation services, and the recommended assistive devices are paid for by the public health care system. Furthermore, even the cost of travel to the agency is limited to one encounter with the optometrist for the low-vision evaluation. All other services, including the initial global assessment, are typically provided in the home of the visually impaired person.
In the Australian study,
13 it was found that the major obstacles were lack of referral and/or understanding of available services. Some of the focus group members in that study simply did not consider themselves to be visually impaired and, therefore, not in need of services. These findings have since then been replicated by Matti et al.
27 and similar attitudes and reactions were noted in the Montreal Barriers Study where a number of individuals rejected the idea of seeking services from an agency with words such as “blind” or “braille” in its name.
31 This situation is not novel, in that four decades ago this issue was raised during an evaluation of Canadian vision rehabilitation services initiated by the Canadian National Institute for the Blind.
32
In summary, the present study attempted to identify barriers to vision rehabilitation that exist in a seemingly ideal context and, at the same time, to challenge existing folklore concerning this issue. The data of phase I indicate that, even when ophthalmologists are perfectly aware of the existence of rehabilitation services, a significant portion of their eligible patients remain unaware. Secondly, even though the cross-sectional data of phase I seemed to indicate that referrals were typically made late in the disease process, closer investigation of agency files in phase II showed that most patients who had been referred first arrived with only mild acuity loss. Furthermore, in phase II, it was found that ophthalmologists who refer their patients regularly also refer appropriately, that is, early in the disease process. Typically, those who refer at a later stage are those who only refer sporadically. Finally, there is a general belief among rehabilitation-related professionals that, if visually impaired individuals were aware of these services, they would indeed use them. Phase III of our study indicates that, even with full knowledge of the services and ideal referral conditions, only 56% actually entered the rehabilitation process. It stands to reason that other factors such as psychosocial or psychological characteristics may also play a significant role in the decision-making process of the individual.
One aspect that should be examined in more detail in this context is whether sufficient evidence exists concerning the effectiveness of vision rehabilitation services. Historically, this kind of information has been scarce or completely not existent. In recent years, a randomized clinical trial carried out within the Veterans Affairs (VA) rehabilitation system demonstrated improvement in all aspects of visual function in individuals who participated in a rehabilitation program.
33,34 Equally strong evidence outside of the VA system has yet to be amassed. If there were indeed such a pool of evidence, ophthalmologists and other eye care professionals might be more inclined to refer, and patients might be more likely to access proven successful services, as they are in other domains, such as physical or stroke therapy settings.
Supported by the Reseau Vision of the FRSQ, the Institut Nazareth et Louis-Braille, and the MAB-Mackay Rehabilitation Centre.