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

People with physical disabilities represent approximately 10% of the world's population, yet they are among the most underserved groups.[1] It has been reported that this population often lacks opportunities to engage in preventive healthcare activities and does not have adequate access to primary healthcare, hospital care, and long-term care services.[1,2] People with physical disabilities often report that they must spend considerable effort educating their primary care providers about their disability[2] and they feel that physicians sometimes focus inappropriately on their disability, per se, rather than on the health problems with which they present.[3] Although some research has been done in the United States, Britain, and New Zealand evaluating access to and perceived quality of healthcare services among people with physical disabilities,[4-12] this area has thus far been neglected in Canada.

US studies have suggested that increasing disability is a risk factor for less satisfaction with healthcare and more unmet healthcare needs.[13] In 1 study that examined perceptions of access to and quality of medical care among people with disabilities, respondents perceived more problems with the quality of care they received rather than with access to care.[4] However, access barriers to adequate primary healthcare have been well demonstrated in the American literature and include: unmet transportation needs,[14] lack of provider knowledge regarding disabilities,[4] being refused medical treatment by a physician because of a disability,[15] architectural barriers such as lack of adequate ramps into healthcare facilities and inaccessible examining tables,[16] poor coordination of healthcare services, and negative attitudes of healthcare providers toward people with disabilities.[17]

In this study, we surveyed people with a wide range of physical disabilities living in the metropolitan Toronto region of Canada to examine access to and degree of satisfaction with primary healthcare services. Our working definition of primary healthcare for this study was any healthcare services that are usually provided in or initiated from a family practitioner's office.

Methods

A self-administered anonymous questionnaire was mailed to a convenience sample of members of several disability organizations as well as persons discharged from a large rehabilitation hospital within the past 2 years in Canada's largest metropolitan area, the Toronto region. All disability organizations approached to help in the recruitment of participants for this study agreed to participate. A questionnaire developed by the authors to investigate access to and perceived quality of primary healthcare services among people with physical disabilities was based on a literature review, interviews with key medical and consumer informants, and the Short Form-36 Health Survey from the Medical Outcome Study. The study was approved by the University Health Network Research Ethics Board.

A packet containing a cover letter explaining the study, the questionnaire, and a prestamped return envelope was sent to 1026 individuals. To protect anonymity, subjects were not asked to identify themselves by name on the questionnaires. Some of the mailing lists the authors were given by the disability organizations included interested nondisabled advocates and parents of children with disabilities. Thus, an unknown number of those receiving the survey packets would not have met the stated subject criteria (an individual living with a chronic disability in the Toronto region who is 16 years of age or older).

As well, to protect confidentiality, several disability organizations agreed only to send the survey packages to their members without providing the mailing lists to the authors, resulting in the possibility that some of the names on the various mailing lists were repeated and more than 1 survey was sent to the same person. Unfortunately, because of these factors, an accurate response rate could not be calculated for this study.

Statistical analyses on the returned questionnaires were carried out using the Statistical Package for the Social Sciences. Descriptive analyses (frequencies, means, and standard deviations [SDs]) of categoric and continuous variables were conducted.

Results

A total of 201 people (response rate = 20%) completed and returned the survey. The mean age of the respondents was 47.4 years (SD = 16.12, range 16-90), 61.2% were female, 68% were born in Canada, 44.3% were single, 50.7% had achieved a minimum of a college diploma, and 19.9% were currently employed. The mean age at which the respondents became disabled was 28.6 years (SD = 22.51, range 0-74), 23.9% were born with their disability, and 52.7% reported that their condition was getting worse with time. A wide variety of disabilities were represented in our sample (Table 1). Participants' mean scores on each dimension of the SF-36 Health Survey in comparison with Canadian general population means are presented in Table 2.[6]

The respondents had been seeing their family doctors an average of 8.6 years (SD = 8.0) and a mean of 7.6 times per year (SD = 7.8). The mean number of medical specialists seen in the previous 6 months was 2.6, with 14.4% reporting having seen 5 or more specialists within that time period.

An attempt was made to evaluate several different factors that may affect access to healthcare among people with physical disabilities, including both physical and attitudinal barriers. Difficulty obtaining a family doctor's services was reported by 17.4% of participants and 8% reported they had, at some point in their lives, been refused medical treatment by a family doctor because of their disability. Twenty-seven percent of respondents felt there was inadequate time allotted to their medical appointments and 16.9% did not feel listened to by their family doctor.

Apparently equal proportion of respondents felt that their family doctor and other medical office staff were insensitive (20.4%,) or oversensitive (19.9%) about their disability. Only 9.7% of respondents felt that as a patient with a disability, they were less valued by their family doctor. Participants also reported further physical barriers to access including difficulty keeping medical appointments because of transportation problems (38.8%) and accessing their family doctor's office (32.3%), equipment (38.3%), and washroom (22.9%).

Despite the fact that a substantial proportion of people with physical disabilities experienced some barrier accessing medical care, 82.1% reported being either very or somewhat satisfied with the services that their family doctor provided. However, 19.4% of respondents felt they were receiving inadequate primary healthcare services and 21.9% felt that their disability prevented them from receiving appropriate primary healthcare services.

Most of the demographic variables investigated showed no significant relationship to the access and quality variables. Age, however, was positively correlated with greater satisfaction with information provided by family physicians regarding services available for people with disabilities, better perceived understanding of respondents' disability on the part of family doctors, and less difficulty accessing a family doctor's office and services.

Also, older respondents were less likely to report feeling that their family doctor was insensitive or oversensitive about their disability. Respondents who reported that their condition is getting worse with time were significantly more likely to report having difficulty accessing a family doctor's office and services or that treatment was refused because of their disability. They were also less likely to feel that their family doctor was insensitive or oversensitive about their disability, and more satisfied with the information their family doctor provided to them regarding services available for people with disabilities.

Discussion

The results of this survey show that a significant proportion of people with physical disabilities are experiencing difficulty accessing adequate and appropriate primary healthcare services. Indeed, approximately one third of respondents reported difficulty accessing their family doctor's office, equipment, and/or washroom; approximately one fifth felt that their family doctor was insensitive or oversensitive about their disability; and about the same proportion felt that they were receiving inadequate primary healthcare.

The results obtained in this study pertaining to access barriers are comparable to those reported in the United States[4,5,14,15] and suggest that there are similar barriers to accessing primary healthcare services among people with physical disabilities living in Canada. For example, 38.8% of participants in our study compared with 34.8% in the United States reported having difficulty keeping medical appointments due to transportation problems.[14] Also, 26.9% of our sample felt that inadequate time is allotted to medical appointments -- this is quite comparable to the one third of American people with disabilities who report that their doctors hurry too much when they treat them.[4]

This study does have several limitations, perhaps the most major being the lack of a nondisabled control group with which to compare perceptions of access to and quality of primary care physicians' services. Although some of the statistics regarding access barriers speak for themselves, they would be stronger with a control comparison. Generalizability of our findings is limited by the fact that we recruited from a circumscribed large urban geographic area -- the Toronto region. We may be underestimating the extent of healthcare access barriers since Toronto has a high per capita ratio of family doctors and a relatively good public transportation system and, accordingly, people with physical disabilities might face even greater challenges obtaining medical services in other regions of Canada, especially outlying areas.

Most of the limitations of the current study, however, are related to the method used in recruiting participants. First, because we mainly recruited participants who belong to disability groups, we may have introduced selection bias into our results as individuals not affiliated with any group for people with disabilities may perceive their access to and quality of healthcare differently.[18] Second, those who were interested enough to participate in the study may also be a select group of individuals for whom healthcare issues are especially salient or problematic.[19] Our inability to determine an accurate response rate has been described earlier. Lastly, our sample was very highly educated (54.1% having a minimum of a college diploma), thereby possibly limiting the generalizability of some results.

We also need to acknowledge that this study dealt only with patient perceptions of access to and quality of primary healthcare. Thus, we have no confirmation or detail about why a particular service was not provided by a primary care physician (eg, time allocation, not offered, patient preference, table access problem) or a particular office was not accessible (eg, parking, door width, rugs). Since we only have information regarding the perceived barriers faced by people with physical disabilities from their perspective, we are left without knowledge about barriers encountered by physicians.

Despite these limitations, the important implication of the study is that about one third of people with physical disabilities feel they are experiencing access barriers to receiving appropriate primary healthcare. The study results also suggest where efforts to improve services could start. Resources are available for family physicians to make their offices more accessible to persons with physical disabilities (see Appendix I). Accessible examination tables that adjust in height, properly placed in an examination room to accommodate different transferring abilities of patients, can be purchased (see Appendix I). Confidence in being able to assist appropriately and safely in patient transfers is a skill that can be learned, as is providing Pap tests in alternative positions (on side or in wheelchair).

Office management skills in preplanning time required for office visits, considering disability transport service schedules, and the availability of required attendants all decrease barriers for the patient. Time may well be a barrier for the physician, especially in a fee-for-service environment. Financial barriers may also exist for physicians who choose to make modifications to their existing facilities in order to make their offices more accessible to patients with physical disabilities. Consideration should be given by governments to sponsor grants that would financially assist physicians or clinics who choose to make their services physically accessible to patients with disabilities.

Another important result from this study is that many patients feel that their family doctors lack knowledge about disabilities and services available for people with disabilities. Indeed, when asked why they felt they had unmet primary healthcare needs, many participants responded that their family doctor lacked education regarding disabilities. In the typical medical school curriculum, very little is taught about disabilities or about treating people who have disabilities. The participants in this study felt that this topic should be covered more extensively within the medical school curriculum and their family doctors would benefit from continuing education regarding disabilities. In this regard, we have included some resources in Appendix I.

A complementary study investigating family doctors' experiences, attitudes, and perceived barriers regarding treating patients with disabilities should be undertaken. It is hoped that by comparing the results from this study of patients to the results that would be obtained from the upcoming study of physicians, the barriers to accessing primary healthcare services will be better understood and more comprehensive solutions found.

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 2 Quality Issues