Physicians’ Perceptions Of People With Disability And Their Health Care

Released in 2000, Healthy People 2010 was the first of the decennial reports produced by the Department of Health and Human Services (HHS) delineating national public health priorities to identify people with disability as experiencing health care disparities, partially attributing these inequities to common misconceptions about this population.¹ During the past two decades increasing evidence has documented persistent disparities for people with disability, now including more than sixty-one million Americans²—numbers that will grow in coming years with the aging population. Disparities exist in screening and preventive services,^3,4 cancer diagnosis and treatment,^5,6 reproductive and pregnancy care,^7,8 communication with health care professionals,^9,10 and satisfaction with care.¹¹ Many patient-level factors likely contribute to these disparities, such as patients’ complex underlying health conditions,¹² disadvantages in social determinants of health,^13,14 and patients’ preferences for care.^6,11 Systems-level factors also contribute, including inadequate training of health care professionals,^15,16 ineffective communication accommodations,^9,10,17 physical access barriers,^18,19 and inadequate knowledge among physicians about legal requirements to provide equitable care under the Americans with Disabilities Act (ADA) of 1990.^18,20 Despite it being more than thirty years since the enactment of this landmark civil rights legislation for people with disability, this population continues to experience inequitable health care on many levels.

One concern that has received relatively little empirical attention is the attitudes of physicians and specifically whether physicians have implicit or explicit biased views of people with disability. Over centuries, societies have stigmatized people with disability,²¹ although the nature of these negative perceptions varies by disability type (for example, people with intellectual disability or serious mental illness are typically more marginalized than people with other types of disabilities). Limited research suggests that physicians can share these societal prejudices toward people with disability.^22,23

A systematic review of studies investigating racial/ethnic implicit bias among physicians found that unconscious beliefs significantly affect treatment decisions, patients’ outcomes, and other aspects of care.²⁴ If parallel effects hold for people with disability, physicians’ bias toward disability could contribute to health care disparities. We are unaware of other studies of how US physicians, nationally and across specialties, perceive people with disability and whether they welcome them as patients. Better understanding of physicians’ perceptions could inform efforts to improve the quality of care and achieve equity for this large and growing population. To advance this understanding, we developed and conducted a survey of US physicians to elicit their perceptions of people with disability and their care.

Study Data And Methods

The Massachusetts General Hospital/Partners HealthCare and University of Massachusetts Boston Institutional Review Boards approved this study.

Survey Development And Testing

No existing survey served our purposes. We therefore developed a single survey suitable for physicians serving adult patients and practicing in seven specialties: family medicine, general internal medicine, rheumatology, neurology, ophthalmology, orthopedic surgery, and obstetrics-gynecology (OB-GYN). We chose the first six specialties because of the likely high prevalence of people with disability in their patient panels. We included OB-GYN because many women see gynecologists for routine care, and prior research has found high rates of physical access barriers in OB-GYN practices.¹⁸

Survey design and testing involved several steps. First, we conducted twenty in-depth, open-ended individual interviews with physicians across the seven specialties who were practicing in Massachusetts to explore their experiences with caring for patients with disability.^17,20,25,26 Second, we conducted three videoconference focus groups with twenty-two practicing physicians in the selected specialties from seventeen states nationwide, identified through Sermo, an online social network of physicians.^27,28 Third, based on this qualitative research, we constructed the survey instrument in an iterative fashion. Trained interviewers at the Center for Survey Research, University of Massachusetts Boston, pretested the draft survey instrument with eight cognitive interviews with practicing physicians. The center formally pilot tested the revised survey with fifty subjects randomly selected from the sampling frame (see below). The final instrument included seventy-five questions grouped into eight modules, including five addressing specific disability types (mobility, vision, hearing, intellectual disability, and serious mental illness), physicians’ responsibilities under the ADA and views about people with disability and their quality of care, practice characteristics, and participants’ characteristics (for the survey instrument, see online appendix exhibit A1).²⁹ At the outset of each disability-specific module, we provided definitions of that disability type.

Sampling

Using commercially available data from IQVIA, we identified all board-certified US physicians in the seven specialties (n = 277,675). From this list, we excluded physicians practicing in military or Veterans Affairs (VA) hospitals, all trainees (residents and fellows), locum tenens physicians, hospitalists, physicians with incomplete addresses or telephone numbers, and those board-certified in both medicine and pediatrics. These exclusions left 172,734 physicians in the sampling frame. Within each specialty, we selected simple random samples of physicians: 350 each in family practice and general internal medicine and 140 in each of the five specialties. This process yielded a total sample of 1,400 physicians (700 in primary care and 700 specialists). Because of budget constraints, we could not adequately power this survey to examine differences between each of the specialties.

Survey Administration

The Center for Survey Research administered the surveys via priority mail in October 2019. It sent all sampled physicians a paper survey, recruitment cover letter, information sheet, postage-paid return envelope, and up-front cash honorarium of $50. The instructions asked respondents to complete the paper survey and return it in the postage-paid, addressed return envelope or to answer electronically using an individualized link provided in the mailing. Both the paper and electronic surveys contained a unique subject identification number, allowing the Center for Survey Research to conduct several follow-up calls and send additional mailings (without the cash incentive) to nonrespondents. The center began making reminder calls to all nonrespondents three weeks after the initial mailing, and it sent a second mailing to 552 nonrespondents in early January 2020. After again telephoning nonrespondents, the center sent a final mailing March 5, 2020. Logistical concerns caused by the coronavirus disease 2019 (COVID-19) pandemic extended the data collection; the center officially closed the survey in June 2020.

The survey’s first page contained screening questions to confirm that the sampled physicians met eligibility criteria—that is, that they were board certified in one of the seven specialties, actively practiced in the US, and spent at least ten hours weekly in direct patient care. Of the 1,400 sampled physicians, 175 (12.5 percent) were deemed ineligible based on their screening question responses or because they were residents or fellows; were retired or had an inactive medical license; were too ill or deceased; were away from practice for the study duration; or had left the US or the Center for Survey Research could not reach them via mail, telephone, or internet. Of the 1,225 eligible physicians, 714 completed the survey. Of the respondents, 84.2 percent answered on paper surveys and 15.8 percent responded electronically. Using American Association of Public Opinion Research response rate number 3 for mailed surveys of specifically named persons, the weighted overall response rate was 61.0 percent.³⁰ Response rates by specialty were as follows: family medicine, 61.1 percent; general internal medicine, 63.2 percent; rheumatology, 57.7 percent; neurology, 58.0 percent; ophthalmology, 63.0 percent; orthopedic surgery, 58.6 percent; and OB-GYN, 61.6 percent.

Outcome And Predictor Variables

We asked physicians several questions to elucidate the factors underlying their perceptions of people with disability and their care. These questions addressed whether physicians welcome patients with disability into their practices, perceptions of fairness, the value of caring for patients with disability, confidence in caring for people with disability, and the quality of life of people with disability. Here we summarize specification of dichotomous outcome and predictor variables from survey questions (see appendix exhibit A for the survey instrument).²⁹

Fairness, Understanding Patients, Welcoming Patients:

A multi-item battery began with, “To what extent do you agree or disagree with the following statements…?” and then stated: “Understanding my patients with disability is valuable to me as a physician,” “People with disability are often treated unfairly in the health care system,” and “I welcome patients with disability into my practice.” Response options were “strongly disagree,” “somewhat disagree,” “somewhat agree,” and “strongly agree.” We created dichotomous variables for these three items, treating “strongly agree” as the positive outcome and all other responses as the negative outcome.

Quality Of Life:

We asked, “In general, compared to persons without disability, do you believe the overall quality of life of persons with significant disability is…?,” with response options being “a lot better,” “a little better,” “the same,” “a little worse,” and “a lot worse.” For analysis, we grouped responses into a dichotomous variable, combining “a little worse” and “a lot worse” responses to identify participants who believe that people with significant disability have worse overall quality of life than people without disability.

Confidence About Caring For People With Disability:

We asked, “Overall, how confident are you in your ability to provide the same quality of care to patients with disability as you provide to patients without disability…?” with response options being “very,” “somewhat,” “not very,” and “not at all” confident. For analysis, we created a dichotomous variable, with “very confident” representing a positive outcome and all other responses representing a negative outcome (that is, not very confident).

Race/Ethnicity:

Too few participants reported being Black or Hispanic for us to analyze these groups separately. We therefore combined them with people reporting “Other” race/ethnicity.

Analyses

We performed all analyses using SAS, version 9.4, and considered two-sided $p<0.05$ to be significant. We weighted the data to account for differences in the probability of selection and response rates within each specialty. The exhibits present unweighted ns, weighted percentages, and statistical significance. We assessed the significance of differences in the group distributions with two-sided chi-square tests. We obtained adjusted odds ratios and 95% confidence intervals from separate multivariable logistic regressions evaluating the relationship of the independent variables to the dichotomous outcomes defined above.

Our major outcome variable was whether physicians welcome people with disability into their practices; we were particularly interested in the association of this outcome with physicians’ confidence in being able to provide care of the same quality to people with disability that they provide to other patients. We fit three separate models for this outcome: Model 1 included independent variables representing the personal and practice characteristics of participants, model 2 included all model 1 variables and the three variables representing physicians’ perceptions, and model 3 added confidence about caring for people with disability to the model 2 variables.

Limitations

This study had important limitations. Because of budgetary constraints, we could not survey sufficient numbers of participants to compare findings across specialties. To maximize our response rate, we needed to develop a short survey (estimated fifteen-minute completion time), and yet we had many topics to cover. As noted above, five survey modules addressed specific disability types; however, the outcomes examined here cut across disabilities (that is, asked about disability in general). Physicians may have responded differently to questions about particular disability types (for example, mobility disability versus serious mental illness). We did not include questions that would explicitly link physicians’ perceptions to their care decisions for patients with disability (for example, ordering of Pap tests) or would explore complex concepts such as “confidence in providing care.” An online Implicit Association Test, similar to that for racial and ethnic minorities, is available,³¹ but including this test in the survey protocol was infeasible. Although research has examined findings from diverse health care providers who chose to take the Implicit Association Test,³² future research should explore test results pertaining to disability across random samples of physicians.

Research should also aim to understand better our significant findings relating to physicians’ race and ethnicity. As expected, given the racial and ethnic distribution of US physicians, we had too few Black and Hispanic physicians to enable us to examine these issues fully. Finally, other physicians and specialties may have perspectives on disability that differ from those of our participants. We excluded physicians in the active military or VA practice, who often see many patients with disability and make specific accommodations—beyond those in civilian practices—to support these patients. Similarly, we did not include physical medicine or rehabilitation specialists, who because of their training might provide an interesting comparison. In addition, we did not explore issues relating to caring for children with disability, whose accommodation needs frequently differ significantly from those of adults.

Study Results

Exhibit 1 shows the personal and practice characteristics of the 714 survey participants. Overall, 62.0 percent were male; 64.5 percent were White; 61.7 percent worked in private, community-based practices; and 36.2 percent reported that they or a family member had any significant disability. Only twenty-five participants indicated that they require a disability accommodation to do their job (too few for detailed analysis).

Perceptions Of People With Disability And Their Care

Appendix exhibit A2 shows the complete, noncollapsed responses to the five questions used to create our dichotomous predictor and outcome variables,²⁹ and exhibit 2 shows percentages for the dichotomous variables. Across participants, 79.8 percent “strongly” agreed that understanding their patients with disability is “very valuable,” 18.1 percent “strongly” agreed that patients with disability are “often treated unfairly in the health care system,” 82.4 percent of participants reported that people with significant disability have worse quality of life than people without disability, and 40.7 percent were “very confident” about being able to “provide the same quality of care” to disabled patients.

Participants’ Attitudes And Personal And Practice Characteristics

Exhibit 2 shows bivariable associations between participants’ attitude measures and their personal and practice characteristics. No individual characteristics were consistently statistically significantly associated with participants’ perceptions. Exhibit 3 shows multivariable logistic regression results; regression results including confidence intervals appear in appendixes A3 and A4.²⁹ Women were more likely than men (adjusted odds ratio: 2.36; 95% CI: 1.35, 4.12) to “strongly” value understanding their patients with disability. Compared with White physicians, Asian physicians were more likely to “strongly” value this understanding (aOR: 2.04; 95% CI: 1.02, 4.09). In addition, compared with White physicians, Asian and other non-White physicians were more likely to feel “very confident” in their ability to provide the same quality of care to people with disability (Asian, aOR: 1.73, 95% CI: 1.04, 2.89; other non-White, aOR: 1.77, 95% CI: 1.03, 3.04).

Welcoming Patients With Disability Into Practices

Exhibit 4 shows adjusted odds ratios for the major outcome variable: strong agreement about welcoming patients with disability into their practices. Overall, 56.5 percent of participants “strongly” agreed that they welcome patients with disability into their practices (data not shown). In the multivariable analyses, model 1 includes only participants’ personal and practice characteristics, model 2 adds their responses to three perception questions, and model 3 adds the confidence in caring for patients with disability question to model 2. In all models, female physicians had significantly higher odds ratios than their male counterparts for “strongly” welcoming patients with disability. In addition to this gender effect, the full model found several significant associations: Asian physicians had significantly lower odds ratios than White physicians (aOR: 0.41; 95% CI: 0.23, 0.75), longer-serving physicians had significantly lower odds ratios than shorter-serving physicians (aOR: 0.58; 95% CI: 0.35, 0.97), physicians in private practice had significantly lower odds ratios (aOR: 0.38; 95% CI: 0.19, 0.75) than academic medical center physicians, physicians who valued understanding their patients with disability had higher odds ratios (aOR: 5.46; 95% CI: 3.03, 9.83) than other physicians, and physicians who were “very confident” in being able to provide the same quality of care to people with disability had higher odds ratios (aOR: 3.53; 95% CI: 2.20, 5.67) than other physicians.

Discussion

This national survey that examined the perceptions of practicing US physicians about caring for people with disability produced troubling findings. Only roughly half of physicians “strongly” agreed that they would welcome patients with disability into their practices. More than four-fifths of physicians reported that people with significant disability have “worse” quality of life than people without disability, and only two-fifths reported feeling “very confident” in their ability to provide the same quality of care to people with disability that they provide to people without disability. Roughly one-fifth “strongly” agreed that the health care system often treats disabled patients “unfairly.” Our findings suggest that large proportions of practicing US physicians might hold biased or stigmatized perceptions of people with disability. Our survey did not assess whether participants appreciated that their perceptions are biased or instead believe that their views are justified and therefore do not negatively affect the quality of care they provide to disabled patients.

We are unaware of prior studies in which physicians expressed this level of bias toward other populations that also experience disparities in care (for example, racial or ethnic minorities or people who identify as lesbian, gay, bisexual, or transgender).^33–36 Rather, these sorts of studies generally confront concerns that participants will provide socially desirable responses. It seems unlikely, for example, that more than four-fifths of physicians would assert that racial and ethnic minority patients have worse quality of life than nonminority patients or that nearly one-half of physicians would openly admit not strongly welcoming minority patients into their practices. Yet in our study, many physicians did not provide the socially desirable response.

Our multivariable findings suggest one potential explanation for the finding about not strongly welcoming disabled patients into their practices: Physicians expressing strong confidence in their ability to provide the same quality of care to people with disability had significantly higher odds of welcoming them into their practices. Medical schools generally do not include disability topics in their curricula.^15,16,37,38 Nevertheless, even physicians with more than twenty years of practice, who presumably should have extensive experience with this population, did not appear more likely to strongly welcome patients with disability into their practices.

Our study was not designed to test whether these perceptions translate directly into disparities in care. As noted earlier, studies of racial/ethnic implicit bias among physicians have found that these beliefs significantly affect treatment decisions, patients’ outcomes, and other aspects of care.²⁴ It seems reasonable to expect that explicit bias would work similarly, with deleterious effects on care equity for people with disability.

Qualitative research studies involving interviews with people with disability suggest that physicians often make erroneous assumptions about patients’ values and preferences, limiting their health care options and compromising quality of care.^6,39 Examples include failures to provide Pap tests to women with disability or to discuss contraception options because of incorrectly assuming they are neither sexually active nor at risk for unintended pregnancy.³⁹ Another example involves physicians assuming that women with disability who are newly diagnosed with early-stage breast cancer prefer mastectomy to breast-conserving surgery under the inaccurate presumption that these women care little about preserving their bodies and physical appearance. Some physicians believe that they have superior technical knowledge about disabling conditions, but they can be wrong, taking actions that harm patients. An example is physicians incorrectly believing that all patients with spinal cord injury cannot feel pain below the level of their injury and therefore refusing to provide pain relief for procedures below that level (for example, topical anesthetic during skin biopsy of the lower leg), thus causing these patients sometimes excruciating pain.³⁹

Some patients with disability express frustration about physicians’ lack of insight into the quality of their daily lives.³⁹ Yet asking patients with disability to prove their quality of life to their physicians to avoid inequitable treatment is ethically unacceptable. Why should people with disability, unlike other patients, be compelled to justify to their physicians how they value their lives? More than twenty years ago, researchers investigated how perceptions of the quality of life of people with disability can diverge from societal assumptions. These inquiries identified a so-called disability paradox:⁴⁰ that many people with significant disability equilibrate to living with functional limitations and enjoy good quality of life. Under the disability paradox, “the general public, physicians and other health care workers perceive that persons with disabilities have an unsatisfying quality of life despite the fact that over 50% of these people report an excellent or good quality of life.”⁴⁰ More than three decades after the ADA, the disability paradox concept seems somewhat outdated, given its assumptions that people without disability have the authority to define what constitutes good-quality life and that all people’s lives must fit some preconceived notion of “normality.”

Our study underscores that many physicians perceive worse quality of life for people with disability.

However, just as it did for racial and ethnic minorities, the COVID-19 pandemic has exposed long-standing aspects of US health care that severely disadvantage people with disability.⁴¹ As states promulgated crisis standards of care to guide decisions allocating scarce resources, such as tests, intensive care unit beds, and mechanical ventilators,⁴² some of these standards explicitly excluded people with disability.⁴³ Concerns that crisis standards of care would discriminate against people with disability prompted the HHS Office for Civil Rights to warn on March 28, 2020, that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities.”⁴⁴ Our study underscores that many physicians perceive worse quality of life for people with disability. The high prevalence of negative perceptions of living with disability raises questions about constituting the triage teams that make critical resource decisions when crisis standards of care are invoked. Proactively assessing implicit and explicit biases toward disability among physicians involved in decision making concerning crisis standards of care is critically important.

Conclusion

Confidence in being able to provide the same quality of care was strongly associated with welcoming disabled patients.

Sixty-one million Americans have some type of disability,² and these numbers are growing.¹² All physicians and health care providers can expect to see increasing volumes of patients with disability. Our findings about physicians’ willingness to welcome patients with disability, confidence in caring for these patients, and problematic perceptions of quality of life were therefore deeply concerning and have important implications for health care delivery in the US. Confidence in being able to provide the same quality of care was strongly associated with welcoming disabled patients. All levels of medical education should include more training about disability, including disability cultural competence²⁶ and etiquette.⁴⁵ Training that provides greater empathy about patients’ daily lives, such as house calls⁴⁶ or standardized patients who have disability,³⁷ might offer important insights. Similar to programs in which trainees take online Implicit Association Tests relating to race and ethnicity,⁴⁷ educators could add an Implicit Association Test disability module. Finally, situations in which people with disability confront special vulnerability, such as decision making around crisis standards of care,^43,44 require heightened attention to ensure equitable care.

ACKNOWLEDGMENTS

This work was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Grant No. 1R01HD091211-01A1. The authors are grateful to Joy Hamel, Kristi L. Kirschner, and Mary Lou Breslin for their contributions to designing the focus group moderator’s guide and the survey questions. The funders did not have any role in the study design; collection, analysis, and interpretation of data; writing the manuscript; and the decision to submit the manuscript for publication. The authors are responsible for the content, including data analysis. Statements in the article do not necessarily represent the official views of, or imply endorsement by, the National Institutes of Health or the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

NOTES

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