{"subscriber":false,"subscribedOffers":{}}

Cookies Notification

This site uses cookies. By continuing to browse the site you are agreeing to our use of cookies. Find out more.
×

Research Article

Disability

Physicians’ Perceptions Of People With Disability And Their Health Care

Affiliations
  1. Lisa I. Iezzoni ([email protected]) is a professor of medicine at Harvard Medical School, based at the Health Policy Research Center, Mongan Institute, Massachusetts General Hospital, in Boston, Massachusetts.
  2. Sowmya R. Rao is a statistician in the Biostatistics Center at Massachusetts General Hospital and at the Boston University School of Public Health.
  3. Julie Ressalam is a senior research coordinator in the Center for Bioethics and Humanities, Anschutz Medical Campus, University of Colorado, in Aurora, Colorado.
  4. Dragana Bolcic-Jankovic is the director of survey operations and a research fellow in the Center for Survey Research at the University of Massachusetts Boston, in Boston, Massachusetts.
  5. Nicole D. Agaronnik is a medical student at Harvard Medical School. When this work was performed, she was a research assistant in the Mongan Institute Health Policy Center, Massachusetts General Hospital.
  6. Karen Donelan is the Stuart H. Altman Chair in U.S. Health Policy at the Heller School for Social Policy and Management, Brandeis University, in Waltham, Massachusetts. At the time this work was performed, she was a senior scientist at the Health Policy Research Center at the Mongan Institute, Massachusetts General Hospital, and an associate professor in the Department of Medicine at Harvard Medical School.
  7. Tara Lagu is an associate professor in the Institute for Healthcare Delivery and Population Science and the Department of Medicine at Baystate Health and the University of Massachusetts Medical School, in Springfield, Massachusetts.
  8. Eric G. Campbell is a professor and director of research in the Center for Bioethics and Humanities, Anschutz Medical Campus, University of Colorado.
PUBLISHED:Free Accesshttps://doi.org/10.1377/hlthaff.2020.01452

Abstract

More than sixty-one million Americans have disabilities, and increasing evidence documents that they experience health care disparities. Although many factors likely contribute to these disparities, one little-studied but potential cause involves physicians’ perceptions of people with disability. In our survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5 percent strongly agreed that they welcomed patients with disability into their practices, and 18.1 percent strongly agreed that the health care system often treats these patients unfairly. More than thirty years after the Americans with Disabilities Act of 1990 was enacted, these findings about physicians’ perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.

TOPICS

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).

Exhibit 1 Distribution of characteristics of participants in the survey of physicians’ perceptions of people with disability, 2019–20

NumberaPercent
Personal characteristics
Gender
 Male45162.0
 Female24838.0
Race/ethnicity
 White44064.5
 Asian13817.3
 Hispanic436.7
 African American375.9
 Native American20.2
 Pacific Islander60.9
 Other304.5
Self or family member has any significant disability
 Yes24436.2
 No44963.8
Professional and practice characteristics
Primary specialty
 Primary care35764.1
 Specialty careb35735.9
Years since graduating from medical school
 <2022233.5
 20+46066.5
Practice type
 Academic teaching hospital12716.5
 Private practice in community43861.7
 Other13021.8
No. of physicians in practice
 Very small (1–3)22633.2
 Small (4–11)31447.4
 Large (12+)15019.4
No. of patients seen per week
 Low (<60)22131.1
 Medium (60–80)22433.6
 High (81+)26235.3
Percent of patients with Medicaid or uninsured
 Non-safety-net provider (>35%)44068.0
 Safety-net provider (35%+)17632.0

SOURCE Authors’ analysis of data from their survey, “Caring for Patients With Functional Limitations: National Survey Funded by the NIH,” 2019–20. NOTES The numbers shown are unweighted. The percentages shown were weighted to account for differences in the probability of selection and response rates within each specialty.

a Do not sum to total participant number (n = 714) because of missing data.

b Specialties include rheumatology, neurology, ophthalmology, orthopedics, and obstetrics-gynecology.

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.

Exhibit 2 Bivariable associations between perceptions about people with disability (PWD) and their care and survey participant characteristics

Strongly agree that understanding PWD is valuable to them as physician
Strongly agree that PWD are treated unfairly in health system
Rates quality of life for PWD as worse
Very confident about providing same quality of care for PWD
No.%No.%No.%No.%
All participants54479.811618.156982.428340.7
Personal characteristics
Gender*****
 Male32575.57217.836583.319443.7
 Female20886.24318.619380.78134.9
Race/ethnicity*****
 White32676.37318.735683.316336.4
 Asian10783.92418.411384.95344.0
 Hispanic/African American/other9787.11815.98978.95852.1
Self or family member has any significant disability
 Yes18579.44019.419484.08835.8
 No34479.87517.736081.718342.3
Professional and practice characteristics
Primary specialty***
 Primary care28281.96218.127581.812937.7
 Specialty care26276.25418.029483.615446.2
Years since graduating from medical school**
 <2015575.34420.218084.47134.6
 20+36882.56917.336781.719543.1
Practice type*****
 Academic teaching hospital9477.53328.110279.63526.7
 Private practice in community33879.36316.235782.719445.7
 Other10883.21915.510583.35337.5
No. of physicians in practice*
 Very small (1–3)18181.03617.918381.310647.3
 Small (4–11)23979.44916.625783.711438.4
 Large (12+)11679.33022.512182.16036.1
No. of patients seen per week*****
 Low (<60)15478.84726.117385.27133.5
 Medium (60–80)17979.73716.918181.38839.7
 High (81+)20480.33112.720981.212047.0
Percent of patients with Medicaid or uninsured**
 Non-safety-net provider (<35%)33978.97218.637286.117339.7
 Safety-net provider (≥35%)13779.82916.213678.67441.8

SOURCE Authors’ analysis of data from their survey, “Caring for Patients with Functional Limitations: National Survey Funded by the NIH,” 2019–20. NOTES Significance indicators are based on two-sided chi-square tests of the association between participants’ characteristics and their perceptions of people with disability. The percentages shown are weighted to account for differences in the probability of selection and response rates within each specialty.

* p<0.10

** p<0.05

*** p<0.01

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).

Exhibit 3 Multivariable associations between perceptions about people with disability (PWD) and their care and survey participants’ characteristics

Adjusted odds ratios
Strongly agree that understanding PWD is valuable to them as physicianStrongly agree that PWD are treated unfairly in health systemRates quality of life for PWD as worseVery confident about providing same quality of care for PWD
Personal characteristics
Gender (ref: male)*****
 Female2.360.950.580.98
Race/ethnicity (ref: White)****
 Asian2.040.951.331.73
 Hispanic/African American/other2.011.011.111.77
Self or family member has any significant limitations (Ref: no)
 Yes0.981.131.170.92
Professional and practice characteristics
Primary specialty (ref: primary care)*
 Specialty care0.751.141.231.40
Years since graduating from medical school (ref: <20)***
 20+2.200.860.761.35
Practice type (ref: academic teaching hospital)
 Private practice in community1.070.581.422.01
 Other1.300.651.741.73
Number of physicians in practice (ref: solo)
 Small0.840.801.030.83
 Large0.960.901.180.80
Number of patients seen per week (ref: low)**
 Medium1.240.640.781.18
 High1.280.420.531.45
Percent of patients with Medicaid or uninsured (ref: not safety-net provider)*
 Safety-net provider0.940.780.591.00

SOURCE Authors’ analysis of data from their survey, “Caring for Patients with Functional Limitations: National Survey Funded by the NIH,” 2019–20. NOTES Details about characteristics (physician practice size categories, patients seen per week, and percent of patients with Medicaid or uninsured) are in exhibits 1 and 2. The data have been weighted to account for differences in the probability of selection and response rates within each specialty.

* p<0.10

** p<0.05

*** p<0.01

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.

Exhibit 4 Multivariable associations between welcoming people with disability (PWD) in their practices and survey participants’ characteristics, perceptions of PWD and their care, and confidence in providing the same quality of care

Adjusted odds ratios
Model 1: participant characteristicsModel 2: model 1 + three perceptions indicatorsModel 3: model 2 + confidence in providing same quality of care
Personal characteristics
Gender (ref: male)*********
 Female2.422.052.29
Race/ethnicity (ref: White)*****
 Asian0.660.510.41
 Hispanic/African American/other1.571.321.15
Self or family member has any significant limitations (ref: no)
Yes1.121.111.15
Professional and practice characteristics
Primary specialty (ref: primary care)*
Specialty care1.351.491.39
Years since graduating from medical school (ref: <20)***
20+0.840.640.58
Practice type (ref: academic teaching hospital)****
 Private practice in community0.540.490.38
 Other0.580.500.42
No. of physicians in practice (ref: solo)
 Small0.710.690.71
 Large0.780.740.80
No. of patients seen per week (ref: low)
 Medium0.800.700.69
 High1.261.131.09
Percent of patients with Medicaid or uninsured (ref: not safety-net provider)
 Safety-net provider1.011.031.01
Perceptions
Understanding patients with disability is valuable to me as a physician (ref: not strongly agree)******
 Strongly agreea6.195.46
Patients with disability treated unfairly in health system (ref: not strongly agree)
 Strongly agreea0.850.96
Quality of life for PWD (ref: worse)
 Not worsea1.121.31
Confidence
Same quality of care for PWD (ref: not very confident)***
 Very confidentaa3.53

SOURCE Authors’ analysis of data from their survey, “Caring for Patients with Functional Limitations: National Survey Funded by the NIH,” 2019–20. NOTES Details about characteristics (physician practice size categories, patients seen per week, and percent of patients with Medicaid or uninsured) are in exhibits 1 and 2. The data have been weighted to account for differences in the probability of selection and response rates within each specialty.

a Variable not included in model.

* p<0.10

** p<0.05

*** p<0.01

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).3336 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

  • 1 Department of Health and Human Services. Healthy People 2010, vols. 1–2: with understanding and improving health and objectives for improving health. Second edition. Washington (DC): Government Printing Office; 2000. Google Scholar
  • 2 Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of disabilities and health care access by disability status and type among adults—United States, 2016. MMWR Morb Mortal Wkly Rep. 2018;67(32):882–7. Crossref, MedlineGoogle Scholar
  • 3 Andresen EM, Peterson-Besse JJ, Krahn GL, Walsh ES, Horner-Johnson W, Iezzoni LI. Pap, mammography, and clinical breast examination screening among women with disabilities: a systematic review. Womens Health Issues. 2013;23(4):e205–14. Crossref, MedlineGoogle Scholar
  • 4 Horner-Johnson W, Dobbertin K, Lee JC, Andresen EMExpert Panel on Disability and Health Disparities. Disparities in health care access and receipt of preventive services by disability type: analysis of the Medical Expenditure Panel Survey. Health Serv Res. 2014;49(6):1980–99. MedlineGoogle Scholar
  • 5 McCarthy EP, Ngo LH, Roetzheim RG, Chirikos TN, Li D, Drews REet al. Disparities in breast cancer treatment and survival for women with disabilities. Ann Intern Med. 2006;145(9):637–45. Crossref, MedlineGoogle Scholar
  • 6 Edwards DJ, Sakellariou D, Anstey S. Barriers to, and facilitators of, access to cancer services and experiences of cancer care for adults with a physical disability: a mixed methods systematic review. Disabil Health J. 2020;13(1):100844. Crossref, MedlineGoogle Scholar
  • 7 Mitra M, Akobirshoev I, Moring NS, Long-Bellil L, Smeltzer SC, Smith LDet al. Access to and satisfaction with prenatal care among pregnant women with physical disabilities: findings from a national survey. J Womens Health (Larchmt). 2017;26(12):1356–63. Crossref, MedlineGoogle Scholar
  • 8 Horner-Johnson W, Darney BG, Biel FM, Caughey AB. Prolonged postpartum length of hospital stay among women with disabilities. Disabil Health J. 2020;13(4):100934. Crossref, MedlineGoogle Scholar
  • 9 Steinberg AG, Barnett S, Meador HE, Wiggins EA, Zazove P. Health care system accessibility. Experiences and perceptions of deaf people. J Gen Intern Med. 2006;21(3):260–6. Crossref, MedlineGoogle Scholar
  • 10 Schneider K. Caring better for patients who are blind or visually impaired. Am Fam Physician. 2013;88(11):774. MedlineGoogle Scholar
  • 11 de Vries McClintock HF, Barg FK, Katz SP, Stineman MG, Krueger A, Colletti PMet al. Health care experiences and perceptions among people with and without disabilities. Disabil Health J. 2016;9(1):74–82. Crossref, MedlineGoogle Scholar
  • 12 Field MJ, Jette AM, editors. The future of disability in America. Washington (DC): National Academies Press; 2007. Google Scholar
  • 13 Emerson E, Madden R, Graham H, Llewellyn G, Hatton C, Robertson J. The health of disabled people and the social determinants of health. Public Health. 2011;125(3):145–7. Crossref, MedlineGoogle Scholar
  • 14 Frier A, Barnett F, Devine S, Barker R. Understanding disability and the “social determinants of health”: how does disability affect peoples’ social determinants of health? Disabil Rehabil. 2018;40(5):538–47. Crossref, MedlineGoogle Scholar
  • 15 Kirschner KL, Curry RH. Educating health care professionals to care for patients with disabilities. JAMA. 2009;302(12):1334–5. Crossref, MedlineGoogle Scholar
  • 16 Minihan PM, Robey KL, Long-Bellil LM, Graham CL, Hahn JE, Woodard Let al. Desired educational outcomes of disability-related training for the generalist physician: knowledge, attitudes, and skills. Acad Med. 2011;86(9):1171–8. Crossref, MedlineGoogle Scholar
  • 17 Agaronnik N, Campbell EG, Ressalam J, Iezzoni LI. Communicating with patients with disability: perspectives of practicing physicians. J Gen Intern Med. 2019;34(7):1139–45. Crossref, MedlineGoogle Scholar
  • 18 Lagu T, Hannon NS, Rothberg MB, Wells AS, Green KL, Windom MOet al. Access to subspecialty care for patients with mobility impairment: a survey. Ann Intern Med. 2013;158(6):441–6. Crossref, MedlineGoogle Scholar
  • 19 Pharr JR, James T, Yeung Y-L. Accessibility and accommodations for patients with mobility disabilities in a large healthcare system: how are we doing? Disabil Health J. 2019;12(4):679–84. Crossref, MedlineGoogle Scholar
  • 20 Agaronnik ND, Pendo E, Campbell EG, Ressalam J, Iezzoni LI. Knowledge of practicing physicians about their legal obligations when caring for patients with disability. Health Aff (Millwood). 2019;38(4):545–53. Go to the articleGoogle Scholar
  • 21 Iezzoni LI. Stigma and persons with disabilities. In: Parekh R, Childs E, editors. Stigma and prejudice: touchstones in understanding diversity in healthcare. New York (NY): Springer International; 2016. p. 3–21. CrossrefGoogle Scholar
  • 22 Gerhart KA, Koziol-McLain J, Lowenstein SR, Whiteneck GG. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Ann Emerg Med. 1994;23(4):807–12. Crossref, MedlineGoogle Scholar
  • 23 Satchidanand N, Gunukula SK, Lam WY, McGuigan D, New I, Symons ABet al. Attitudes of healthcare students and professionals toward patients with physical disability: a systematic review. Am J Phys Med Rehabil. 2012;91(6):533–45. Crossref, MedlineGoogle Scholar
  • 24 Hall WJ, Chapman MV, Lee KM, Merino YM, Thomas TW, Payne BKet al. Implicit racial/ethnic bias among health care professionals and its influence on health care outcomes: a systematic review. Am J Public Health. 2015;105(12):e60–76. Crossref, MedlineGoogle Scholar
  • 25 Agaronnik N, Campbell EG, Ressalam J, Iezzoni LI. Accessibility of medical diagnostic equipment for patients with disability: observations from physicians. Arch Phys Med Rehabil. 2019;100(11):2032–8. Crossref, MedlineGoogle Scholar
  • 26 Agaronnik N, Campbell EG, Ressalam J, Iezzoni LI. Exploring issues relating to disability cultural competence among practicing physicians. Disabil Health J. 2019;12(3):403–10. Crossref, MedlineGoogle Scholar
  • 27 Agaronnik N, Pendo E, Lagu T, DeJong C, Perez-Caraballo A, Iezzoni LI. Ensuring the reproductive rights of women with intellectual disability. J Intellect Dev Disabil. 2020;45(4):365–76. Crossref, MedlineGoogle Scholar
  • 28 Agaronnik ND, Lagu T, DeJong C, Perez-Caraballo A, Reimold K, Ressalam Jet al. Accommodating patients with obesity and mobility difficulties: observations from physicians. Disabil Health J. 2020 Jun 26. [Epub ahead of print]. MedlineGoogle Scholar
  • 29 To access the appendix, click on the Details tab of the article online.
  • 30 American Association for Public Opinion Research. Standard definitions: final dispositions of case codes and outcomes for surveys [Internet]. Amsterdam: AAPOR; 2016 [cited 2020 Dec 22]. Available from: https://www.aapor.org/AAPOR_Main/media/publications/Standard-Definitions20169theditionfinal.pdf Google Scholar
  • 31 Project Implicit [home page on the Internet]. Boston (MA): Project Implicit; [cited 2020 Dec 9]. Available from: https://implicit.harvard.edu/implicit/ Google Scholar
  • 32 VanPuymbrouck L, Friedman C, Feldner H. Explicit and implicit disability attitudes of healthcare providers. Rehabil Psychol. 2020;65(2):101–12. Crossref, MedlineGoogle Scholar
  • 33 Sabin JA, Riskind RG, Nosek BA. Health care providers’ implicit and explicit attitudes toward lesbian women and gay men. Am J Public Health. 2015;105(9):1831–41. Crossref, MedlineGoogle Scholar
  • 34 Henry J. Kaiser Family Foundation. National Survey of Physicians part 1: doctors on disparities in medical care. San Francisco (CA): KFF; 2002. Google Scholar
  • 35 Reschovsky JD, O’Malley AS. Do primary care physicians treating minority patients report problems delivering high-quality care? Health Aff (Millwood). 2008;27(3):w222–31. Go to the articleGoogle Scholar
  • 36 Varkey AB, Manwell LB, Williams ES, Ibrahim SA, Brown RL, Bobula JAet al. Separate and unequal: clinics where minority and nonminority patients receive primary care. Arch Intern Med. 2009;169(3):243–50. Crossref, MedlineGoogle Scholar
  • 37 Long-Bellil LM, Robey KL, Graham CL, Minihan PM, Smeltzer SC, Kahn Pet al. Teaching medical students about disability: the use of standardized patients. Acad Med. 2011;86(9):1163–70. Crossref, MedlineGoogle Scholar
  • 38 Mitra M, Smith LD, Smeltzer SC, Long-Bellil LM, Sammet Moring N, Iezzoni LI. Barriers to providing maternity care to women with physical disabilities: perspectives from health care practitioners. Disabil Health J. 2017;10(3):445–50. Crossref, MedlineGoogle Scholar
  • 39 Iezzoni L, O’Day B. More than ramps. A guide to improving healthcare quality and access for people with disabilities. New York (NY): Oxford University Press; 2006. CrossrefGoogle Scholar
  • 40 Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48(8):977–88. Crossref, MedlineGoogle Scholar
  • 41 Sabatello M, Burke TB, McDonald KE, Appelbaum PS. Disability, ethics, and health care in the COVID-19 pandemic. Am J Public Health. 2020;110(10):1523–7. Crossref, MedlineGoogle Scholar
  • 42 White DB, Lo B. A framework for rationing ventilators and critical care beds during the COVID-19 pandemic. JAMA. 2020;323(18):1773–4. Crossref, MedlineGoogle Scholar
  • 43 Mello MM, Persad G, White DB. Respecting disability rights—toward improved crisis standards of care. N Engl J Med. 2020;383(5):e26. Crossref, MedlineGoogle Scholar
  • 44 Department of Health and Human Services, Office of Civil Rights. BULLETIN: civil rights, HIPAA, and the coronavirus disease 2019 (COVID-19) [Internet]. Washington (DC): HHS; 2020 Mar 28 [last updated 2020 Apr 3; cited 2020 Dec 9]. Available from: https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf Google Scholar
  • 45 Lagu T, Iezzoni LI, Lindenauer PK. The axes of access—improving care for patients with disabilities. N Engl J Med. 2014;370(19):1847–51. Crossref, MedlineGoogle Scholar
  • 46 Siebens H, Cairns K, Schalick WO 3rd, Fondulis D, Corcoran P, Bartels E. PoWER program: people with disabilities educating residents. Am J Phys Med Rehabil. 2004;83(3):203–9. Crossref, MedlineGoogle Scholar
  • 47 Haider AH, Sexton J, Sriram N, Cooper LA, Efron DT, Swoboda Set al. Association of unconscious race and social class bias with vignette-based clinical assessments by medical students. JAMA. 2011;306(9):942–51. Crossref, MedlineGoogle Scholar
   
Loading Comments...