Abstract
Over 61 million Americans have disabilities, and increasing evidence documents that they experience health care disparities. While many factors likely contribute to these disparities, one little-studied but potential cause involves physicians’ perceptions of people with disability. Our survey of 714 practicing U.S. physicians nationwide found that 82.4% reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7% of physicians were very confident about their ability to provide equal quality care to patients with disability, just 56.5% strongly agreed they welcome disabled patients into their practices, and 18.1% strongly agreed that the health care system often treats these patients unfairly. More than 30 years after the Americans with Disabilities Act, these findings about physicians’ perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could perhaps contribute to persistent health care disparities affecting people with disability.
Keywords: disability, physician attitudes, physician bias, disparities
Introduction
Released in 2000, Healthy People 2010 was the first of these decennial reports 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 Over the last two decades, increasing evidence has documented persistent disparities for people with disability, now including over 61 million Americans2 – numbers that will grow in coming years with the aging population. Disparities include 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.11,6 Systems-level factors also contribute, including inadequate training of health care professionals,15,16 ineffective communication accommodations,17,9,10 physical access barriers,18,19 and inadequate knowledge among physicians about legal requirements to provide equitable care under the 1990 Americans with Disabilities Act (ADA).18,20 Despite more than 30 years since 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, 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 (e.g., persons with intellectual disability or serious mental illness are typically more marginalized than individuals 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 possibly contribute to health care disparities. We are unaware of other studies of how U.S. physicians, nationally and across specialties, perceive people with disability and whether they welcome them as patients. Better understanding of physicians’ perceptions of people with disability and their care could inform efforts to improve quality of care and achieve equity for this large and growing population.
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 purpose. 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 found high rates of physical access barriers in OB/GYN practices.18
Survey design and testing involved several steps. First, we conducted 20 in-depth, open-ended individual interviews with physicians across the seven specialties practicing in Massachusetts to explore their experiences with caring for patients with disability.17,20,25,26 Second, we conducted 3 videoconference focus groups with 22 total practicing physicians in the selected specialties from 17 states nationwide, identified through an online social network of physicians (www.SERMO.com).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 (CSR), University of Massachusetts-Boston, pretested the draft survey instrument with 8 cognitive interviews with practicing physicians. CSR formally pilot tested the revised survey with 50 subjects randomly selected from the sampling frame (see below). The final instrument included 75 questions grouped into 8 modules, including five addressing specific disability types (mobility, vision, hearing, and intellectual disability and serious mental illness), physicians’ responsibilities under the Americans with Disabilities Act and views about people with disability and their quality of care, practice characteristics, and participants’ characteristics (for 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 U.S. physicians in the seven specialties (n = 277,675). From this list, we excluded physicians practicing in military or Veterans Affairs hospitals, all trainees (residents and fellows), locum tenens physicians, hospitalists, physicians with incomplete addresses or telephone numbers, and those board-certified both in 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 physicians in each of the 5 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
CSR administered the surveys via priority mail in October 2019. CSR sent all sampled physicians a paper survey, a recruitment cover letter, information sheet, postage-paid return envelope, and up-front cash honorarium of $50. Instructions asked respondents to complete the paper survey and return it to CSR in the postage-paid, addressed return envelope or to answer electronically using an individualized link indicated in the mailing. Both paper and electronic surveys contained a unique subject identification number, allowing CSR to conduct several follow up calls and send additional mailings (without the cash incentive) to non-respondents. CSR began reminder calls to all non-respondents three weeks after the initial mailing. CSR sent a second mailing to 552 non-respondents in early January 2020; after again telephoning non-respondents, CSR sent the final mailing on March 5, 2020. Logistical concerns caused by the novel coronavirus pandemic extended the data collection; CSR officially closed the survey in June 2020.
The survey’s first page contained screening questions to confirm sampled physicians met eligibility criteria: i.e., were board certified in one of the seven specialties, actively practiced in the U.S., and spent ≥ 10 hours weekly in direct patient care. Of the 1,400 sampled physicians, 175 (12.5%) were deemed ineligible based on their screening question responses or because they were residents or fellows, retired or had an inactive medical license, too ill or deceased, away from practice for study duration, had left the U.S., or CSR could not reach them via mail, phone, or internet. Of the 1,225 eligible physicians, 714 completed the survey. Of the respondents, 84.2% answered on paper surveys and 15.8% electronically. Using the American Association of Public Opinion Research response rate #3 for mailed surveys of specifically named persons, the weighted overall response rate was 61.0%.30 Response rates by specialty were: family medicine, 61.1%; general internal medicine, 63.2%; rheumatology, 57.7%; neurology, 58.0%; ophthalmology, 63.0%; orthopedic surgery, 58.6%; and OB/GYN, 61.6%.
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. Below, we summarize specification of dichotomous outcome and predictor variables from survey questions.29
Fairness, understanding patients, and welcoming patients.
A multi-item battery began with, “To what extent do you agree or disagree with the following statements?” and then asked: (1) “Understanding my patients with disability is valuable to me as a physician”; (2) “People with disability are often treated unfairly in the health care system”; and (3) “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 (QOL).
We asked, “In general, compared to persons without disability, do you believe the overall quality of life of persons with significant disability is…. a lot better, a little better, the same, a little worse, a lot worse.” For analysis, we grouped responses into a dichotomous variable, combining the “a little worse” and “a lot worse” responses to identify participants who believe people with significant disability have worse overall QOL than nondisabled people.
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 … very confident, somewhat confident, not very confident, 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 (i.e., 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 9.4 (SAS Institute, Cary, NC) 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 n’s, weighted percentages, and the statistical significance. We assessed the significance of differences in the group distributions with two-sided chi-square tests. We obtained adjusted odds ratios (ORs) and 95% confidence intervals (CI) 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 the same quality care to people with disability. We fit 3 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 3 variables representing physicians’ perceptions; and Model 3 added confidence about caring for people with disability to the Model 2 variables.
Limitations
This study has 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 15-minute completion time), and yet we had many topics to cover. As noted above, 5 survey modules addressed specific disability types; however, the outcomes examined here cut across disabilities (i.e., asked about disability in general). Physicians may have responded differently to questions about particular disability types (e.g., 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 (e.g., ordering of Pap tests) or explore complex concepts, such as “confidence in providing care.” An online Implicit Association Test (IAT), similar to that for racial and ethnic minorities, is available,31 but including this IAT in the survey protocol was infeasible. Although research has examined findings from diverse health care providers who chose to take this IAT,32 future research should explore disability IAT results 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 U.S. physicians, we had too few Black and Hispanic physicians to examine these issues fully. Finally, other physicians and specialties may have different perspectives on disability than our participants. We excluded physicians in the active military or Department of Veterans Affairs, 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.
Results
Exhibit 1 shows personal and practice characteristics of the 714 survey participants. Overall, 62.0% were male, 64.5% were white, 61.7% worked in private, community-based practices, and 36.2% reported that they or a family member had any significant disability. Only 25 participants indicated they require a disability accommodation to do their job (too few for detailed analysis).
Exhibit 1:
Distribution of Characteristics of Survey Participants
N b | % | |
---|---|---|
Personal Characteristics | ||
Gender | ||
Male | 451 | 62.0 |
Female | 248 | 38.0 |
Race/Ethnicity | ||
White | 440 | 64.5 |
Asian | 138 | 17.3 |
Hispanic | 43 | 6.7 |
African American | 37 | 5.9 |
Native American | 2 | 0.2 |
Pacific Islander | 6 | 0.9 |
Other | 30 | 4.5 |
Self or family member has any significant disability | ||
Yes | 244 | 36.2 |
No | 449 | 63.8 |
Professional and Practice Characteristics | ||
Primary specialty | ||
Primary care | 357 | 64.1 |
Specialty carea | 357 | 35.9 |
Years since graduating medical school | ||
< 20 | 222 | 33.5 |
≥ 20 | 460 | 66.5 |
Practice type | ||
Academic teaching hospital | 127 | 16.5 |
Private practice in the community | 438 | 61.7 |
Other | 130 | 21.8 |
Number of physicians in practice | ||
Very Small (1–3) | 226 | 33.2 |
Small (4–11) | 314 | 47.4 |
Large (12+) | 150 | 19.4 |
Number of patients seen per week | ||
Low (< 60) | 221 | 31.1 |
Medium (60–80) | 224 | 33.6 |
High (≥ 81) | 262 | 35.3 |
Percent of patients with Medicaid and/or Uninsured | ||
Non-safety net provider (< 35%) | 440 | 68.0 |
Safety net provider (≥ 35%) | 176 | 32.0 |
Source: Author’s analysis of data from “Caring for Patients with Functional Limitations: National Survey Funded by the NIH,” 2019–2020.
Specialties include rheumatology, neurology, ophthalmology, orthopedics, and obstetrics/gynecology
Do not sum to total participant number (n = 714) because of missing data
Perceptions of People with Disability and Their Care
Appendix Exhibit A229 shows the complete, non-collapsed responses to the 5 questions used to create our dichotomous predictor and outcome variables, and Exhibit 2 shows percentages for the dichotomous variables. Across participants: 79.8% “strongly agree” that understanding their patients with disability is “very valuable”; 18.1% “strongly agree” that patients with disability are “often treated unfairly in the health care system”; 82.4% of participants reported that people with significant disability have worse QOL than people without disability; 40.7% were “very confident” about being able to “provide the same quality of care” to disabled patients; and 56.5% “strongly agree” that they welcome patients with disability into their practices.
Exhibit 2:
Bivariable Associations Between Perceptions about People with Disability (PWD) and Their Care and Survey Participant Characteristics
Characteristic | Strongly agree that understanding PWD is valuable to them as MD | Strongly agree that PWD are treated unfairly in health system | Rates quality of life for PWD as worse | Very confident about providing equal quality of care for PWD | ||||
---|---|---|---|---|---|---|---|---|
n | %a | n | %a | n | %a | n | %a | |
All participants | 544 | 79.8 | 116 | 18.1 | 569 | 82.4 | 283 | 40.7 |
Gender | *** | ** | ||||||
Male | 325 | 75.5 | 72 | 17.8 | 365 | 83.3 | 194 | 43.7 |
Female | 208 | 86.2 | 43 | 18.6 | 193 | 80.7 | 81 | 34.9 |
Race/Ethnicity | *** | ** | ||||||
White | 326 | 76.3 | 73 | 18.7 | 356 | 83.3 | 163 | 36.4 |
Asian | 107 | 83.9 | 24 | 18.4 | 113 | 84.9 | 53 | 44.0 |
Hispanic/African American/Other | 97 | 87.1 | 18 | 15.9 | 89 | 78.9 | 58 | 52.1 |
Self or family member has any significant disability | ||||||||
Yes | 185 | 79.4 | 40 | 19.4 | 194 | 84.0 | 88 | 35.8 |
No | 344 | 79.8 | 75 | 17.7 | 360 | 81.7 | 183 | 42.3 |
Primary specialty | * | ** | ||||||
Primary care | 282 | 81.9 | 62 | 18.1 | 275 | 81.8 | 129 | 37.7 |
Specialty care | 262 | 76.2 | 54 | 18.0 | 294 | 83.6 | 154 | 46.2 |
Years since graduating medical school | ** | * | ||||||
<20 | 155 | 75.3 | 44 | 20.2 | 180 | 84.4 | 71 | 34.6 |
≥ 20 | 368 | 82.5 | 69 | 17.3 | 367 | 81.7 | 195 | 43.1 |
Practice type | ** | *** | ||||||
Academic teaching hospital | 94 | 77.5 | 33 | 28.1 | 102 | 79.6 | 35 | 26.7 |
Private practice in the community | 338 | 79.3 | 63 | 16.2 | 357 | 82.7 | 194 | 45.7 |
Other | 108 | 83.2 | 19 | 15.5 | 105 | 83.3 | 53 | 37.5 |
Number of physicians in practice | * | |||||||
Very Small (1–3) | 181 | 81.0 | 36 | 17.9 | 183 | 81.3 | 106 | 47.3 |
Small (4–11) | 239 | 79.4 | 49 | 16.6 | 257 | 83.7 | 114 | 38.4 |
Large (12+) | 116 | 79.3 | 30 | 22.5 | 121 | 82.1 | 60 | 36.1 |
Number of patients seen per week | *** | ** | ||||||
Low (< 60) | 154 | 78.8 | 47 | 26.1 | 173 | 85.2 | 71 | 33.5 |
Medium (60–80) | 179 | 79.7 | 37 | 16.9 | 181 | 81.3 | 88 | 39.7 |
High (≥ 81) | 204 | 80.3 | 31 | 12.7 | 209 | 81.2 | 120 | 47.0 |
Percent of patients with Medicaid and/or Uninsured | ** | |||||||
Non-safety net provider (< 35% | 339 | 78.9 | 72 | 18.6 | 372 | 86.1c | 173 | 39.7 |
Safety net provider (≥ 35%) | 137 | 79.8 | 29 | 16.2 | 136 | 78.6c | 74 | 41.8 |
Source: Author’s analysis of data from “Caring for Patients with Functional Limitations: National Survey Funded by the NIH,” 2019–2020.
Row percentages
Notes: :
p < 0.10,
p < 0.05,
p < 0.01
Attitudes and Participants’ Personal and Practice Characteristics
Exhibit 2 shows bivariable associations between participants’ attitude measures and participants personal and practice characteristics. No individual characteristics are consistently statistically significantly associated with participants’ perceptions. Exhibit 3 shows multivariable logistic regression results; regression results including confidence intervals appear in online Appendix A3/A4).29 Women were more likely than men – OR (95% CI) = 2.36 (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: OR = 2.04 (1.02, 4.09). Compared with white physicians, Asian and other non-white physicians were more likely to feel “very confident” in their ability to provide equal quality care to people with disability: Asian, OR = 1.73 (1.04, 2.89) and other non-white, OR = 1.77 (1.03, 3.04).
Exhibit 3:
Multivariable Associations Between Perceptions about People with Disability (PWD) and Their Care and Survey Participant Characteristics
Characteristics | Strongly agree that PWD are valuable to them as physicians | Strongly agree that PWD treated unfairly in health system | Rates quality of life for PWD as worse | Very confident about providing equal quality of care for PWD |
---|---|---|---|---|
AOR (95% CI) | ||||
Gender | *** | ** | ||
Male | REF | REF | REF | REF |
Female | 2.36 (1.35,4.12) | 0.95 (0.55,1.63) | 0.58 (0.33,1.01) | 0.98 (0.63,1.52) |
Race/Ethnicity | ** | ** | ||
White | REF | REF | REF | REF |
Asian | 2.04 (1.02,4.09) | 0.95 (0.50,1.81) | 1.33 (0.64,2.77) | 1.73 (1.04,2.89) |
Hispanic/African American/Other | 2.01 (0.96,4.20) | 1.01 (0.50,2.03) | 1.11 (0.56,2.20) | 1.77 (1.03,3.04) |
Self or family member has any significant limitations | ||||
No | REF | REF | REF | REF |
Yes | 0.98 (0.60,1.61) | 1.13 (0.69,1.88) | 1.17 (0.69,1.98) | 0.92 (0.61,1.40) |
Primary specialty | * | |||
Primary care | REF | REF | REF | REF |
Specialty care | 0.75 (0.47,1.20) | 1.14 (0.70,1.86) | 1.23 (0.71,2.13) | 1.40 (0.94,2.07) |
Years since graduating medical school | *** | |||
< 20 | REF | REF | REF | REF |
≥ 20 | 2.20 (1.33,3.64) | 0.86 (0.50,1.48) | 0.76 (0.42,1.37) | 1.35 (0.86,2.10) |
Practice type | ||||
Academic teaching hospital | REF | REF | REF | REF |
Private practice in the community | 1.07 (0.55,2.08) | 0.58 (0.28,1.20) | 1.42 (0.65,3.10) | 2.01 (1.05,3.85) |
Other | 1.30 (0.60,2.83) | 0.65 (0.29,1.47) | 1.74 (0.72,4.19) | 1.73 (0.83,3.58) |
Number of physicians in practice | ||||
Solo (0–2) | REF | REF | REF | REF |
Small (3–10) | 0.84 (0.49,1.47) | 0.80 (0.45,1.43) | 1.03 (0.57,1.87) | 0.83 (0.53,1.31) |
Large (11+) | 0.96 (0.48,1.89) | 0.90 (0.43,1.87) | 1.18 (0.52,2.68) | 0.80 (0.45,1.44) |
Number of patients seen per week | ** | |||
Low (< 60) | REF | REF | REF | REF |
Medium (60–80) | 1.24 (0.69,2.23) | 0.64 (0.36,1.15) | 0.78 (0.39,1.56) | 1.18 (0.70,1.98) |
High (≥ 81) | 1.28 (0.69,2.37) | 0.42 (0.21,0.85) | 0.53 (0.27,1.05) | 1.45 (0.86,2.44) |
Percent of patients with Medicaid and/or Uninsured | * | |||
Non safety net provider (< 35%) | REF | REF | REF | REF |
Safety net provider (≥ 35%) | 0.94 (0.56,1.58) | 0.78 (0.46,1.33) | 0.59 (0.34,1.03) | 1.00 (0.65,1.56) |
C-statistic | 0.68 | 0.62 | 0.61 | 0.63 |
Source: Author’s analysis of data from “Caring for Patients with Functional Limitations: National Survey Funded by the NIH,” 2019–2020.
Notes: :
p < 0.10,
p < 0.05,
p <0.010
Welcoming Patients with Disability into Practices
Exhibit 4 shows odds ratios for the major outcome variable: strong agreement about welcoming patients with disability into their practices. Multivariable Model 1 includes only participants’ personal and practice characteristics; Model 2 adds their responses to 3 perception questions; and Model 3 includes excluding confidence in caring for patients with disability to Model 2. In all models, female physicians had significantly higher odds ratios than males 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, 0.41 (0.23, 0.75); longer-serving physicians had significantly lower odds ratios than shorter-serving physicians, 0.58 (0.35, 0.97); physicians in private practice had significantly lower odds ratios (0.38 [0.19, 0.75]) than academic medical center physicians; physicians who valued understanding their disabled patients had higher odds ratios (5.46 [3.03, 9.83]) than other physicians; and physicians who were “very confident” in being able to provide the same quality care to people with disability had higher odds ratios (3.53 [2.20, 5.67] than other physicians.
Exhibit 4:
Multivariable Associations Between Welcoming People with Disability (PWD) in Their Practices and Survey Participant Characteristics, Perceptions of PWD and Their Care, and Confidence in Providing Same Quality Care
Characteristics | Model 1: participant characteristics | Model 2: Model 1 + three perceptions indicators | Model 2: Model 2 + confidence in providing same quality care |
---|---|---|---|
AOR (95% CI) | |||
Gender | ***** | *** | *** |
Male | REF | REF | REF |
Female | 2.42 (1.53,3.80)a | 2.05 (1.27,3.31) | 2.29 (1.40,3.76) |
Race/Ethnicity | * | ** | ** |
White | REF | REF | REF |
Asian | 0.66 (0.38,1.18) | 0.51 (0.29,0.90) | 0.41 (0.23,0.75) |
Hispanic/African American/Other | 1.57 (0.89,2.78) | 1.32 (0.71,2.47) | 1.15 (0.61,2.19) |
Self or family member has any significant limitations | |||
No | REF | REF | REF |
Yes | 1.12 (0.74,1.71) | 1.11 (0.71,1.73) | 1.15 (0.72,1.85) |
Primary specialty | * | ||
Primary care | REF | REF | REF |
Specialty care | 1.35 (0.89,2.06) | 1.49 (0.95,2.32) | 1.39 (0.88,2.19) |
Years since graduating medical school | * | ** | |
< 20 | REF | REF | REF |
≥ 20 | 0.84 (0.54,1.31) | 0.64 (0.39,1.05) | 0.58 (0.35,0.97) |
Practice type | * | *** | |
Academic teaching hospital | REF | REF | REF |
Private practice in the community | 0.54 (0.29,0.98) | 0.49 (0.25,0.94) | 0.38 (0.19,0.75) |
Other | 0.58 (0.30,1.15) | 0.50 (0.25,1.01) | 0.42 (0.21,0.86) |
Number of physicians in practice | |||
Solo (0–2) | REF | REF | REF |
Small (3–10) | 0.71 (0.44,1.13) | 0.69 (0.41,1.14) | 0.71 (0.42,1.23) |
Large (11+) | 0.78 (0.43,1.42) | 0.74 (0.40,1.37) | 0.80 (0.41,1.54) |
Number of patients seen per week | |||
Low (< 60) | REF | REF | REF |
Medium (60–80) | 0.80 (0.48,1.32) | 0.70 (0.41,1.20) | 0.69 (0.40,1.17) |
High (≥ 81) | 1.26 (0.75,2.13) | 1.13 (0.65,1.99) | 1.09 (0.62,1.91) |
Percent of patients with Medicaid and/or Uninsured | |||
Non safety net provider (<35%) | REF | REF | REF |
Safety net provider (≥35%) | 1.01 (0.65,1.57) | 1.03 (0.65,1.63) | 1.01 (0.63,1.63) |
Understanding patients with disability is valuable to me as a physician | ***** | ***** | |
Not strongly agree | NA | REF | REF |
Strongly Agree | NA | 6.19 (3.49,10.97) | 5.46 (3.03,9.83) |
Patients with disability treated unfairly in health system | |||
Not strongly agree | NA | REF | REF |
Strongly Agree | NA | 0.85( 0.48,1.49) | 0.96 (0.54,1.70) |
Quality of Life PWD | |||
Worse | NA | REF | REF |
Not worse | NA | 1.12 (0.63,1.99) | 1.31 (0.72,2.38) |
Quality of Care for PWD | ***** | ***** | |
Not very confident | NA | NA | REF |
Very confident | NA | NA | 3.53 (2.20,5.67)a |
C-statistic | 0.64 | 0.73 | 0.77 |
-2 Log Likelihood | 136278.5 | 125215.0 | 118333.8 |
Degrees of Freedom | 13 | 16 | 17 |
Source: Author’s analysis of data from “Caring for Patients with Functional Limitations: National Survey Funded by the NIH,” 2019–2020.
p < 0.10,
p < 0.05,
p < 0.01,
p < 0.001,
p < 0.0001
Variable not included in model
Discussion
This national survey that examined perceptions of practicing U.S. physicians about caring for people with disability produced troubling findings. Only roughly half of physicians “strongly agree” 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 nondisabled people, and only two-fifths reported feeling “very confident” in their ability to provide equal care to people with disability. Roughly one-fifth “strongly agree” that the health care system often treats disabled patients “unfairly.” Our findings suggest that large proportions of practicing U.S. 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 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 where physicians express this level of bias towards other populations that also experience disparities in care (e.g., racial or ethnic minorities or persons who identify as lesbian, gay, bisexual, or transgender).33–36 Rather, these sorts of studies generally confront concerns about participants providing 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 do non-minority 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 equal 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 20 years of practice – who presumably should have extensive experience with this population – did not appear more likely to strongly welcome disabled patients 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 of unintended pregnancy.39 Another example involves physicians assuming that women with disability 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 like other women. 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 (e.g., 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 how they value their lives to their physicians? More than 20 years ago, researchers investigated how perceptions of people with disability about their quality of life 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.”23 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.”
However, just as it did for racial and ethnic minorities, the COVID-19 pandemic has exposed long-standing aspects of U.S. health care that severely disadvantage people with disability.41 As states promulgated Crisis Standards of Care (CSC) to guide decisions allocating scarce resources, like tests, intensive care unit beds, and mechanical ventilators,42 some explicitly excluded people with disability.43 Concerns that CSCs would discriminate against people with disability prompted the Office for Civil Rights, U.S. Department of Health and Human Services, on March 28, 2020, to warn: “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 CSCs are invoked. Proactively assessing implicit and explicit biases toward disability among physicians involved in CSC decision-making is critically important.
Conclusion
Sixty-one million Americans have some type of disability, 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 U.S. Confidence in being able to provide equal 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. Similarly to programs where trainees take online Implicit Association Tests relating to race and ethnicity,47 educators could add an IAT disability module. Finally, situations where people with disability confront special vulnerability, like Crisis Standards of Care decision-making,43,44 require heightened attention to ensure equitable care.
Supplementary Material
Acknowledgments
We are grateful to Joy Hamel, PhD, OTR/L, Kristi L. Kirschner, MD, and Mary Lou Breslin for their contributions to designing the focus group moderator’s guide and the survey questions.
Funding:
This work was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Grant No. 1R01HD091211-01A1
Footnotes
Disclosures of conflict of interest: No conflicts
References
- 1.Department of Health and Human Services. Healthy People 2010, Vols. 1–2: With Understanding and Improving Health and Objectives for Improving Health 2nd ed. Washington D.C.: U.S. Government Printing Office; 2000. [Google Scholar]
- 2.Okoro C, Hollis N, Cyrus A, 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):882–887. [DOI] [PMC free article] [PubMed] [Google 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. Women’s Heal Issues. 2013;23(4):e205–14. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Horner-Johnson W, Dobbertin K, Lee JC, Andresen EM. 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):1980–1999. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.McCarthy EP, Ngo LH, Roetzheim RG, et al. Disparities in breast cancer treatment and survival for women with disabilities. Ann Intern Med. 2006;145(9):637–645. [DOI] [PMC free article] [PubMed] [Google 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. [DOI] [PubMed] [Google Scholar]
- 7.Mitra M, Akobirshoev I, Moring NS, et al. Access to and satisfaction with prenatal care among pregnant women with physical disabilities: Findings from a national survey. J Women’s Heal. 2017;26(12):1356–1363. [DOI] [PMC free article] [PubMed] [Google 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. [DOI] [PMC free article] [PubMed] [Google 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):260–266. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Schneider K Caring better for patients who are blind or visually impaired. Am Fam Physician. 2013;88(11):774. [PubMed] [Google Scholar]
- 11.de Vries McClintock HF, Barg FK, Katz SP, et al. Health care experiences and perceptions among people with and without disabilities. Disabil Health J. 2016;9(1):74–82. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Institute of Medicine. The Future of Disability in America. (Field M, Jette A, eds.). Washington D.C.: National Academies Press; 2007. [PubMed] [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):145–147. [DOI] [PubMed] [Google 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):538–547. [DOI] [PubMed] [Google Scholar]
- 15.Kirschner KL, Curry RH. Educating health care professionals to care for patients with disabilities. JAMA. 2009;302(12):1334–1335. [DOI] [PubMed] [Google Scholar]
- 16.Minihan PM, Robey KL, Long-Bellil LM, et al. Desired educational outcomes of disability-related training for the generalist physician: Knowledge, attitudes, and skills. Acad Med. 2011;86(9):1171–1178. [DOI] [PubMed] [Google 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):1139–1145. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Lagu T, Hannon NS, Rothberg MB, et al. Access to subspecialty care for patients with mobility impairment: a survey. Ann Intern Med. 2013;158(6):441–446. [DOI] [PubMed] [Google 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):679–684. [DOI] [PubMed] [Google 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. 2019;38(4):545–553. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Iezzoni LI. Stigma and persons with disabilities. In: Stigma and Prejudice: Touchstones in Understanding Diversity in Healthcare. New York: Springer International; 2016:3–21. [Google 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):807–812. [DOI] [PubMed] [Google Scholar]
- 23.Satchidanand N, Gunukula SK, Lam WY, et al. Attitudes of healthcare students and professionals toward patients with physical disability: a systematic review. Am J Phys Med Rehabil. 2012;91(6):533–545. [DOI] [PubMed] [Google Scholar]
- 24.Hall WJ, Chapman MV, Lee KM, et 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. [DOI] [PMC free article] [PubMed] [Google 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):2032–2038. [DOI] [PMC free article] [PubMed] [Google 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):403–410. [DOI] [PMC free article] [PubMed] [Google 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. June 2020:1–12. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Agaronnik ND, Lagu T, DeJong C, et al. Accommodating patients with obesity and mobility difficulties: Observations from physicians. Disabil Health J. June 2020:100951. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.To access the Appendix, click on the Details tab of the article online.
- 30.The American Association for Public Opinion Research. Standard Definitions: Final Dispositions of Case Codes and Outcomes for Surveys. 9th Edition.; 2016. [Google Scholar]
- 31.Project Implicit. https://implicit.harvard.edu/implicit/. Accessed July 24, 2020.
- 32.VanPuymbrouck L, Friedman C, Feldner H. Explicit and implicit disability attitudes of healthcare providers. Rehabil Psychol. 2020;65(2):101–112. [DOI] [PMC free article] [PubMed] [Google 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):1831–1841. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.The Kaiser Family Foundation. National Survey of Physicians Part 1: Doctors on Disparities in Medical Care.; 2002.
- 35.Reschovsky JD, O’Malley AS. Do primary care physicians treating minority patients report problems delivering high-quality care? Health Aff. 2008;27:w222–w231. [DOI] [PubMed] [Google Scholar]
- 36.Varkey AB, Manwell LB, Williams ES, et al. Separate and unequal: Clinics where minority and nonminority patients receive primary care. Arch Intern Med. 2009;169(3):243–250. [DOI] [PubMed] [Google Scholar]
- 37.Long-Bellil LM, Robey KL, Graham CL, Minihan PM, Smeltzer SC, Kahn P. Teaching medical students about disability: The use of standardized patients. Acad Med. 2011;86(9):1163–1170. [DOI] [PubMed] [Google 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):445–450. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Iezzoni L, O’Day B. More than Ramps. A Guide to Improving Healthcare Quality and Access for People with Disabilities Oxford University Press; 2006. [Google Scholar]
- 40.Albrecht G, Devlieger P. The disability paradox: High quality of life against all odds. Soc Sci Med. 1999;48(8):977–988. [DOI] [PubMed] [Google 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):1523–1527. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.White DB, Lo B. A framework for rationing ventilators and critical care beds during the COVID-19 pandemic. JAMA. March 2020. [DOI] [PubMed] [Google Scholar]
- 43.Mello MM, Persad G, White DB. Respecting disability rights — Toward improved crisis standards of care. N Engl J Med. May 2020. [DOI] [PubMed] [Google Scholar]
- 44.Office of Civil Rights in Action. BULLETIN: Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19). https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf. Published 2020. Accessed September 4, 2020.
- 45.Lagu T, Iezzoni LI, Lindenauer PK. The axes of access--improving care for patients with disabilities. N Engl J Med. 2014;370(19):1847–1851. [DOI] [PubMed] [Google 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):203–209. [DOI] [PubMed] [Google Scholar]
- 47.Haider AH, Sexton J, Sriram N, et al. Association of unconscious race and social class bias with vignette-based clinical assessments by medical students. JAMA. 2011;306(9):942–951. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.