Albina Veltman, BSc (Hons), Donna E. Stewart, MD, FRCPC, Gaétan S. Tardif, MD, FRCPC, Monica Branigan, MD

Abstract

Background: Access to primary healthcare among people with physical disabilities has been a neglected research area in Canada. The authors sought to examine the extent of access to and satisfaction with primary healthcare services for people with physical disabilities living in Canada's largest metropolitan area -- the Toronto region.

Methods: An anonymous self-report questionnaire regarding access to and perceived quality of primary healthcare was mailed to a convenience sample of 1026 members of several disability organizations as well as persons discharged from a rehabilitation hospital within the past 2 years. For the 201 returned surveys (response rate = 20%), the authors evaluated the perceived extent of access to primary healthcare services as well as the level of satisfaction with the quality of these services.

Results: Among the respondents to the questionnaire, 17.4% reported having difficulty obtaining a family doctor's services and 8.0% reported having been refused medical treatment by a family doctor because of their disability. Respondents also reported difficulty in physically accessing their family doctor's office (32.3%), equipment (38.3%), and washroom (22.9%). Although 82.1% of respondents claimed they were very or somewhat satisfied with their family doctor's services, 19.4% felt they were receiving inadequate primary healthcare and 21.9% felt that their disability prevented them from receiving appropriate primary healthcare.

Discussion: Although people who experienced more difficulties may have been more likely to respond to this survey, a significant proportion of people with physical disabilities feel they are experiencing difficulty accessing adequate and appropriate primary healthcare services. Possible solutions to some of the identified access barriers and areas where further research may be required are described.

Introduction

For persons with disabilities, the questions of access and quality of primary care are intimately connected. The ability to receive a service in a physician's office depends on many variables. The ability to make an appointment, arrange transportation, enter the building and office, use the washroom, use the medical equipment, and have sufficient time is discussed in Part 1 of this article. Whether the necessary health maintenance service is offered, and how satisfied the recipients are with these services, are the focus of Part 2, which discusses the perceived quality of primary care.

Our working definition of primary care is care provided in, or initiated from, a family practitioner's office in the community. A single gold standard to measure its quality does not exist. One can refer to the Canadian Task Force on Preventive Health Care[1] or the many practice guidelines available for specific health conditions, none of which are available for specific disabilities. We chose instead to evaluate the perceptions of quality to gain the patient perspective.

American and British literature reveals that patients with disabilities perceive that their practitioners are not always knowledgeable about their disability,[2,3] focus more on their disability than their general health,[4] and do not provide as many preventive services.[5] Much concern has been expressed about the particular problems that women with disabilities face in obtaining appropriate screening for breast and cervical cancer[6] and support in making informed choices regarding their reproductive health.[7] We hope to give a view of the Canadian situation by looking at the experiences of our Toronto participants, including utilization of services, provision of information and referrals, health promotion, perception of the role of the family physician, and satisfaction.

Methods

A questionnaire was developed based on a literature review and interviews with key medical and consumer informants. A decision was made to measure perceived quality of care, because using only high-grade recommendations from the Canadian Task Force would provide a very limited picture. The literature identifies health promotion as an important and often overlooked element of care, which we chose to include in our survey.

As health promotion relies on a collaborative relationship with the healthcare professional, questions pertaining to good communication, including perceived roles and decision-making models, were added to the survey, in addition to specific elements of health promotion. Finally, specific and global satisfaction questions were added. This anonymous self-report questionnaire, which included the Short Form-36 (SF-36) Health Survey, was mailed to a convenience sample of members of several disability organizations and persons discharged from a rehabilitation hospital within the last 2 years. The Statistical Package for the Social Sciences was used analyze the data. (Refer to Part I: Method, for more details about the methodology used in the study.)

Results

The 201 respondents represented a cross-section of the physically disabled population as reported in Part 1. Their mean age was 47.4 years (SD = 16.1; range, 16-90), 61.2% were female, 68% were born in Canada, 44.3% were single, 50.7% had a minimum of a college diploma, and 19.9% were currently employed. A wide variety of disabilities, excluding visual and hearing impairments, were reported (see Part 1, Table 1).

The mean age at which participants became disabled was 28.6 years (SD = 22.5; range, 0-74); 23.9% of the participants were born with their disability. A disability that was progressing with time was experienced by 52.7%. The SF-36 Health Survey mean score results compared with the general Canadian population are presented in Part 1, Table 2. Our sample is more educated, less employed, and more likely to be single than the sample represented in the 1991 Canadian Health and Activity Limitations Survey.[8]

Participants reported on services received during their last health maintenance exam, including elements of the physical exam, investigations, counseling, and information provision (Table 1 and Table 2). Data on specific discussion of reproductive health issues are presented in Table 3. In addition to visiting their family physician a mean of 7.6 times a year (SD = 7.8), the mean number of physician specialists seen in the past 6 months was 2.6 (SD = 1.0). The respondents also used the services of many other healthcare providers (Table 4).

To assess satisfaction with various aspects of their care, participants were asked to rank their experience with their family doctor as very satisfied, somewhat satisfied, neutral, somewhat dissatisfied, or very dissatisfied. Results were as follows: 82.1% of respondents were very or somewhat satisfied with healthcare services provided by their family doctor; 57.2% were very or somewhat satisfied with information given by their family doctor regarding their disability; and 42.3% were very or somewhat satisfied with information about services for the disabled.

With regard to information provided by their family doctors about their other health concerns, 75.1% were very or somewhat satisfied. With regard to coordination of healthcare services, 56.2% of respondents were very or somewhat satisfied. In more general terms, 80.6% believed that they were receiving adequate healthcare services, while 21.9% felt that their disability prevented them from receiving such services.

To gain a better understanding of the participants' expectations of their primary care doctors, they were asked 2 additional questions about roles and the decision-making process. Respondents ranked in order of importance the roles they expected their family doctors to play, number 1 being the most important:

• Look after general health.
• Organize access to specialist services.
• Be an expert on disability.
• Be an advocate for patient services.
• Provide emotional support.

When asked how much they would like to participate with a doctor in making decisions about medical treatment, 42.8% of respondents agreed with the statement "I prefer that my doctor and I share responsibility for making the main decisions," while 39.3% agreed with the statement "I prefer to make the main decisions after seriously considering my doctor's opinions." Only 17.9% wanted the doctor to make the main decisions about medical treatment without the patient's participation.

Discussion

The health maintenance examination is an important part of looking after general health. In our sample, 21.9% of women and 17.9% of men perceived that they had never received a "thorough physical examination." While not exactly comparable, in the 1997 National Population Survey (NPHS) in Canada, only 5% of people surveyed claimed "no physical check-up." Pap smears were reported to have never been received by 12.3% of women respondents in our study, a figure similar to the 15% of women from 1994 NPHS who had never received Pap smears.[9] We found that 54.5% of female survey respondents had received Pap tests every 2 to 3 years or less frequently, compared with the 68% of women in the 1994 NPHS who reported receiving Pap tests 3 years or less before the study.

Mammogram referrals were reported to have not been received by 12.5% of women age 50 and over in our study, while 31% women over 50 never received mammograms in 1994 NPHS. The higher utilization of mammograms among our disabled women may reflect their higher education and more frequent physician visits, since both factors have been shown to be associated with higher mammogram utilization rates among nondisabled women[10] in urban settings. Among men over 50 years of age, 25.6% had never received a rectal/prostate exam. Data were not available on the utilization of the rectal/prostate exam in nondisabled men in the same age group in the NPHS for comparison.

Another aspect of health maintenance and promotion, sexual and reproductive health, has been targeted as a problem for many adults with physical disabilities. Our participants reported low discussion rates for sexuality (28.4%), STDs (14.4%), contraception (17.9%) and reproductive choices (9.5%). These rates of ever having discussed these issues correspond quite closely to rates of wanting to discuss these issues. Perhaps this low rate reflects the patients' lack of confidence in their healthcare providers' ability to give advice that is appropriate for their particular circumstances and their particular disability.[7,11]

Our respondents did not show a high preference for these discussions, which is different from other studies and may reflect our sample bias. Physical or sexual abuse was discussed with 10% of our group, and only 14.9% of the group wished to discuss it. We know that a higher level of abuse is experienced by women with disabilities.[12,13] The situation for disabled men is not well documented. Disabled women may find supports, such as shelters, inaccessible. Clearly these discussions around sexual and reproductive issues are important, but we did not identify what types of patient or physician barriers existed. Unfortunately, there are no comparable data available for nondisabled, age-matched Canadians.

Opportunities for providing health information and counseling exist in the health maintenance exam and in every office visit. While appropriate and effective health promotion has not been defined, consider the possible significance of two interventions in particular -- functional status assessment and emotional inquiry. Many people with disabilities have conditions that continue to progress, as did 52.7% of our disabled respondents. This can be expected to have an impact on their level of functioning and increase the likelihood of unmet needs. Other investigators in the United States[14] have found that the unmet needs in activities of daily living (ADL) are associated with significantly more physician visits, emergency visits, and hospitalizations than disabled populations without unmet ADL needs. Healthcare needs of people with disabilities are different from those of the general population.[4]

Among other differences, people with disabilities who acquire a new condition are more likely to develop secondary functional losses and to require assistive technology. Aging with a disability is also a concern, as people with disabilities are living long enough to experience chronic health problems such as osteoporosis and cardiovascular disease.[15] As these conditions may occur earlier and with greater functional import, questioning patients with disabilities about function becomes key. In our survey, only 38.3% of participants received inquiry around function. Including some functional assessment with a tool such as Barthel (see Physician Resources) or using the resources of another professional, such as a physiotherapist or occupational therapist, may identify unmet needs and secondary disability, which may then be addressed.

The second intervention of significance is inquiry around emotions. We know that the risk of depressive symptoms increases with the presence of chronic conditions.[16] Our survey participants reported a mean score of 59.1 for role limitations due to emotional problems in the SF-36, where 100 is a perfect score. By comparison, the Canadian norm is 84.0 (see Part 1, Table 2). This suggests a significant problem that has not been addressed. It is interesting that our respondents ranked the role of providing emotional support in fifth place when asked about roles they expect their family doctors to play.

Perhaps this role is not valued or expected, or perhaps the ranking reflects a hierarchy of needs that must first be satisfied. In our sample, 58.2% of persons with disabilities were not asked about emotions. Simple tools such as asking open-ended questions or using the BATHE technique (see Physician Resources) may be helpful in initiating this inquiry.

Other health promotion counseling interventions were offered in varying degrees. Healthcare professionals may have a bias that these are less relevant for people with significant physical disabilities. This bias may be unwarranted.[17,18] For example, inquiries about diet were made with 35.3% of respondents, yet weight is a significant issue with diminished mobility and assisted transfers. Exercise was discussed among 38.8% of our group, and has great potential to affect weight, osteoporosis, cardiovascular fitness, and quality of life.

Smoking was discussed with only 15.4% of participants. With perhaps a narrower threshold of health,[4] and in some cases an increased risk of respiratory infections, inquiry about smoking is necessary to determine if any interventions are appropriate to reduce health risks among persons with disabilities. Similarly, inquiry about alcohol consumption was low at 13.4%, yet has a similar potential to be helpful.

In asking about sleep in people with disabilities, one gains information regarding possible depression (increased risk in this population), difficulty turning (risk for pressure sores), and presence of day-night reversal (increased risk with acquired brain injury). Only 41.3% of our participants were asked about sleep. While perhaps not technically an element of health promotion, asking about the presence of pain has enormous implications for the patient. Our participants reported a mean SF-36 score of 53.2 for body pain, where 100 signifies no pain, as compared to 75.6 for the general Canadian population. However, only 46.3% of the respondents were asked about pain. There are definitely potential benefits of health promotion, including questions about function, emotion, and pain, in people with disabilities. It would be interesting to know how health promotion is offered to the nondisabled population, but it could be argued that health promotion is even more important for persons with disabilities.

It is not so clear why these opportunities are being missed. One could speculate that when a disabled person presents for an appointment, the physician prioritizes other medical problems, related or not to the disability, as more important. Certainly qualitative studies have described how persons with disabilities feel that doctors often focus inappropriately on their disability. It is also possible that a physician's model of care may not encompass health promotion.[19] Many other reasons likely exist that would become evident with physician input, possibly including time constraints, financial disincentives, and the belief that another health professional is supplying the service. Explicitly asking about the patients' expectations regarding services, roles, and priorities may help. Agreement between physician and patient has been found to be a key variable that influences outcomes.[20,21] The good news is that family physicians' more frequent encounters with persons with disabilities affords us more opportunities to offer these services.

What are the implications of not inquiring about function and emotion, not offering health promotion, and not clarifying roles and expectations? The answer may be reflected in the responses to the satisfaction questions. Is it surprising that only 57.2% of respondents are very or somewhat satisfied with information given about their disability if their physician has not inquired about function, emotions or pain, and has not agreed with the patient on who was to provide expert advice? Would more than 75.1% be very or somewhat satisfied with information provided about their other health concerns if it included more health promotion?

With regard to coordination of specialist services, 55.2% of respondents were very or somewhat satisfied. Perhaps role clarification would improve satisfaction with coordination of these services and allow for a discussion of who should be supplying these services: family physician, psychiatrist, other healthcare professional, social worker, disability or advocacy group, or patient. It is encouraging that global measures of satisfaction were more highly rated, as 81.4% of our sample felt that they were receiving adequate primary care services. The question still remains: Can we improve upon this?



Conclusion

Our study was undertaken to ascertain whether persons with disabilities in Toronto perceive that they have access to good quality primary care. Significant but solvable physical access problems exist (see Part 1, Physician Resources). These barriers may influence the ability to receive certain services such as elements of the complete physical examination, but did not seriously affect the ability to receive screening for breast and cervical cancer in our survey participants. A serious barrier was identified in the provision of health promotion services, however. One simple approach to reducing this barrier could be through more effective physician-patient communication. Including a functional assessment, addressing emotional status, and clarifying roles and expectations could be starting points for improving service if we choose to include health promotion in our model of care for persons with disabilities.

Acknowledgments

The authors would like to acknowledge the contributions of the following organizations to the recruitment of participants for this study: the Ontario Federation for Cerebral Palsy, Easter Seals, the Brain Injury Association of Toronto, MS Access Support Group, To Have Access Today Awareness Group, Anne Johnston Health Station, the Canadian Paraplegic Association, the Arthritis Society, and the Toronto Rehabilitation Institute.

About the Authors

Monica Branigan, MD, is a general practitioner with 2 years of psychiatry training.

Donna E. Stewart, MD, FRCPC, is Lillian Love Chair in Women's Health at the University Health Network, and Professor of Psychiatry, Obstetrics and Gynecology, Anesthesia, Surgery, Medicine, and Family and Community Medicine at the University of Toronto.

Gaétan Tardif, MD, FRCPC, is Director of the Division of Psychiatry at the University of Toronto and Vice President of Medicine and Physician-in-Chief at the Toronto Rehabilitation Institute.

Albina Veltman BSc, is a 3rd year medical student at the University of Western Ontario, London, Ontario.

Reprint Requests

Please direct Reprint requests to:

Dr. Donna E. Stewart,
Lillian Love Chair in Women's Health,
University Health Network and University of Toronto,
657 University Ave., ML-2-004,
Toronto, ON, M5G 2N2

Fax: 416-340-4185

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Part 1 Access Issues