Last saved by: Gabriel Navarrette

Slide 1: Health Care Disparities for People with Disability and Potential Role of Physician Bias
•	Lisa I. Iezzoni, MD, MSc
•	Professor of Medicine, Harvard Medical School
•	Health Policy Research Center, Massachusetts General Hospital
•	February 25, 2021 
Slide 2: No financial disclosures to report
Slide 3: CONTEXT
•	61 million Americans with disability and these numbers are growing
•	“Disability in America is not a minority issue … Disability affects today or will affect tomorrow the lives of most Americans.” (National Academy of Medicine, 2007)
•	30+ years since passage of the Americans with Disabilities Act
•	43+ years since regulations implemented under Section 504 of 1973 Rehabilitation Act
Slide 4: Why is it so hard to make health care fully equitable and accessible to people with disability?
Slide 5: Why in 2021 do people with disability still confront barriers and experience disparities in their health care?
Slide 6: ORGANIZATION OF TALK
•	Disparities: social determinants of health
•	Disparities: screening and preventive services
•	Physicians’ attitudes and perceptions: survey findings
•	Michael’s story
Slide 7: Social determinants of health
Slide 8: Social determinants of health – social factors that can affect physical and emotional wellbeing and ability to receive health care services. Increasing recognition of their role in population health.
Slide 9: SOCIAL DETERMINANTS OF HEALTH
•	Low incomes
•	Low education
•	High unemployment  rates
•	Poor housing, inaccessible housing, and/or housing insecurity
•	Significant transportation problems
•	Food insecurity
•	Domestic violence, intimate partners, or caregiver abuse (men and women)
Slide 10: RACE/ETHNICITY INTERSECTIONALITY
•	Disability rates
•	24% for Whites
•	30% for Black Americans
•	31% for Hispanics
•	16% for Asians
•	25% for Native Hawaiians or Other Pacific Islanders
•	40% for Native Americans or Alaskan Natives
Slide 11: Coronavirus pandemic has underscored how minority populations are at risk of worse health outcomes.
•	We know that racial and ethnic minority populations experience significant health care disparities.
Slide 12: Health care disparities 
Slide 13: HEALTHY PEOPLE
•	Every 10 years, federal officials put together a road map for improving public health over the next 10 years – Healthy People
•	Healthy People 2010, published in November 2000, was first time people with disability were identified as experiencing disparities
•	Healthy People attributed these disparities partially to erroneous assumptions about the daily lives, values, and expectations of people with disability 
Slide 14: Common misconceptions about people with disabilities contribute to troubling disparities in the services they receive, especially an “underemphasis on health promotion and disease prevention activities.”
Slide 15: Healthy People 2020, published in November 2010, also identified disparities for people with disability. Recommendations involved addressing social determinants of health.
Slide 16: PAP TEST RATES
•	No disability: 85%
•	Mobility difficulty: 78%
•	Sensory difficulty: 80%
•	Mental health difficulties: 74%
•	Cognitive difficulties: 76%
•	Self-care limitations: 68% 
Slide 17: PAP TEST RATES BY MOBILITY DISABILITY LEVEL 
•	No difficulties: 85%
•	Least severe difficulties: 82%
•	Level two: 80%
•	Level three: 78%
•	Level four: 72%
•	Most severe difficulties: 65%
Slide 18: Women with major mobility difficulties are 70% less likely to be asked by their physicians about their need for contraception.
Slide 19: STAGE 1 BREAST CANCER TREATMENT
•	SEER data merged with Medicare data
•	All women < age 65 with Stage 1 breast cancer
•	62% of women without disability got breast conserving surgery compared with 54% of women with disability
•	After accounting for age at diagnosis, race, ethnicity, tumor characteristics, and other factors, women with disability 24% less likely than other women to get breast conserving surgery
Slide 20: AFTER BREAST CONSERVING SURGERY
•	Equivalent outcomes as mastectomy if women with early stage breast cancer follow up with radiation therapy
•	Looking only at women < age 65 with breast conserving surgery, women with disability 17% less likely to get radiation therapy
•	Women with Stage 1 breast cancer and disability 45% more likely to die of their breast cancer than other women
Slide 21: POTENTIAL CAUSES OF DISPARITIES
•	Patients’ complex underlying health conditions and competing priorities
•	Disadvantages in social determinants of health
•	Patients’ preferences for care
•	Inadequate training of health care professionals
•	Ineffective communication accommodations
•	Inaccessible medical diagnostic equipment, including weight scales and exam tables
•	Inadequate knowledge about ADA mandates for equitable care
•	Erroneous assumptions about people with disability
•	Ableism attitudes among clinicians
Slide 22: Physicians’ attitudes and perceptions
Slide 23: NATIONAL SURVEY OF PRACTICING PHYSICIANS
•	First national U.S. survey of practicing physicians and their experiences with and perceptions of caring for people with disability
•	Funded by Eunice Kennedy Shriver National Institute of Child Health and Human Development
•	Because if was first national survey, we tried to cover wide-ranging topics: went shallow, not deep
•	Results here about physicians’ perceptions
•	Published in Health Affairs, February 1, 2021  
Slide 24: THANKS TO RESEARCH TEAM
•	Massachusetts General Hospital
•	Sowmya R. Rao, PhD (statistician)
•	Karen Donelan, ScD, EdM (survey scientist)
•	Nicole D. Agaronnik, BS
•	University of Colorado, Anschutz Medical Campus (Aurora, CO)
•	Eric G. Campbell, PhD (survey scientist)
•	Julie Ressalam, MPH, CHES
•	University of Massachusetts-Boston, Center for Survey Research
•	Dragana Bolcic-Jankovic, PhD (survey scientist, led survey administration)
•	Baystate Health, Springfield, MA
•	Tara Lagu, MD, MPH
Slide 25: PHYSICIAN SPECIALITIES
•	Internal medicine/general internal medicine
•	Family practice
•	Rheumatology
•	Neurology
•	Ophthalmology
•	Orthopedic surgery
•	Obstetrics/gynecology
Slide 26: SURVEY DEVELOPMENT
•	Conducted in-depth individual interviews with 20 practicing physicians in Massachusetts
•	Conducted 3 focus groups with 22 practicing physicians total across 3 states
•	Identified key topic areas for survey
•	Designed survey iteratively
•	Conducted 8 cognitive interviews and 50 pilot tests of draft survey
•	Final survey:  8 modules, 75 questions – again, broad but not deep
Slide 27: CONDUCTING SURVEY
•	Randomly sampled practicing physicians from national list
•	Eliminated trainees, VA physicians, locum tenens physicians, physicians no longer practicing, etc.
•	Sampled 350 physicians in each primary care specialty + 140 physicians in each of the 5 specialties = 1,400 total in sample
•	CSR mailed paper survey in October 2019, with $50 bill inside
•	Also offered option to answer survey on line
•	Final follow up complicated by pandemic in Spring 2020
•	Response rate: 61%
Slide 28: Many findings on various topics. Focus here on physicians’ perceptions of caring for people with disability.
Slide 29: MAIN FINDINGS
•	82% of physicians report that people with significant disability have overall worse quality of life than other people
•	41% of physicians are very confident in their ability to provide equal quality care to people with disability
•	56% strongly welcome people with disability into their practices
Slide 30: OTHER FINDINGS
•	18% of physicians strongly agree that people with disability are often treated unfairly in the health care system
•	80% strongly agree that understanding their patients with disability is very valuable
Slide 31: MULTIVARIABLE ANALYSIS: QOL
•	Women physicians much LESS likely than men to report worse quality of life for people with disability
•	Safety-net physicians much less likely than non-safety net physicians to report worse quality of life for people with disability
Slide 32: MULTIVARIABLE ANAYSIS: WELCOMING PWD
•	Women physicians much more welcoming than men
•	Some racial/ethnic differences, but samples for under-represented minorities too small to evaluate fully
•	Older physicians much less welcoming than younger physicians
•	Physicians in private practice much less welcoming than physicians at teaching hospitals
•	Physicians who value understanding patients with disability much more welcoming
•	Physicians who feel very confident about ability to provide equal quality of care much more welcoming than other physicians
Slide 33: DISCUSSION #1
•	Social desirability bias not evident (survey gave physicians option to say people with disability have same – or better – QOL)
•	Response about worse quality of life suggests strong confidence in their answer (i.e., that no one would argue with their response)
•	Raises question about care for people with disability in times of scarce resources: COVID-19 pandemic
•	Given potential bias of physicians, how do we ensure that people with disability get equal quality care
Slide 34: DISCUSSION #2
•	Only 41% of physicians feel confident in ability to provide equal quality care to people with disability
•	Those who do not feel confident are less welcoming of people with disability in their practices
•	30+ years after enactment of Americans with Disabilities Act, troubling that less than half of physicians feel confident about providing equal quality care
•	Clearly, this must be addressed – but how quickly can that happen?
Slide 35: Why should patients with disability need to prove to their doctor that they value the quality of their life to get equal quality care?
Slide 36: Michael’s story
Slide 37: Michael’s story II
•	Image: Photograph of Michael sitting outdoors in his power wheelchair. He uses a trackball and his chin to operate the wheelchair.
Slide 38: MICHAEL
•	61 years old, 21 year history of primary progressive multiple sclerosis (PPMS)
•	Born Birmingham, England; DPhil physics Oxford University
•	Excellent physical health: high altitude, long distance cyclist; became avid speed skater and cross country skier after moving to North America in 1981 for post-doc at Cornell
•	PPMS diagnosed at age 42; needed wheelchair in 7 years
•	Complete quadriplegia; cannot move his body volitionally below his neck
Slide 39: 4,125 km (≈ 2,563 miles) on wheelchair odometer after 3.5 years of use
Slide 40: MICHAEL’S CARE PROVIDERS
•	To obtain required PCA services and other reasons, Michael enrolled in PACE (Program for All-Inclusive Care of the Elderly)
•	Nursing home-certifiable, Medicare, ≥ age 55
•	Most members transported from home to adult day care, returning to family at night
•	Must exclusively use PACE physicians
•	Some PACE leaders did not want him because he lives alone; they thought he should be in nursing home
•	Worked well: PCA coverage 10 hours/day, home nursing daily
•	Michael did not attend PACE adult day care, preferring to be active in his community
Slide 41: MICHAEL’S CANCER #1
•	March 2015, started complaining of:
•	Loss of appetite
•	Early satiety
•	Occasional vomiting and nausea
•	Reduced food intake
•	Change in bowel patterns
•	Lower abdomen grew distended
•	He asked PACE repeatedly for gastroenterology evaluation, but NP failed to schedule
Slide 42: MICHAEL’S CANCER #2
•	May 2015: blood pressure rose to 160/100-110, despite previously normal values; not controlled by medication
•	June 2015: started having trouble saying more than several words before needing to take a breath
•	Early July 2015: PACE primary care MD visited him at home for 6-month check up, but did not examine him saying he could not get Michael out of his wheelchair
•	Didn’t even lift up his shirt
Slide 43: Michael’s Cancer continued
•	Photograph of rehab power wheelchair, fully recumbent. Thus, the occupant is lying flat on their back, easy for a physician to examine.
Slide 44: Michael’s Cancer continued II
•	A photograph of two people in powered wheelchairs. They are on the sidewalk on a bridge smiling at the camera.
Slide 45: MICHAEL’S CANCER #3
•	My mid-July Michael’s birthday visit
•	Haggard, unable to eat, vomited even small meals, difficulty talking, hugely distended lower abdomen, edematous legs
•	I got Michael’s permission to actively advocate for him with PACE
•	Following Friday, Michael had CT scan
Slide 46: MICHAEL’S CANCER #4
•	Over weekend after CT scan, had fever of 102°, could not eat
•	Visiting nurse prescribed Tylenol
•	Early Monday: I telephoned PCP to find out results of Friday’s CT scan
•	Lower abdominal mass
•	I insisted he be treated at a major academic medical center in  nearby city rather than their affiliated community hospital
Slide 47: MICHAEL’S CANCER #5
•	When admitted, found to have bilateral femoral vein clots
•	July 30, 2015: Michael had a 15-pound gastrointestinal stromal tumor (GIST) removed and IVC filter placed (to prevent clots from reaching his lungs)
•	His blood pressure fell to normal
•	His breathing returned to baseline pattern
•	Takes daily imatinib – fortunately, no side effects
•	56 months later, tumor free
Slide 48: MICHAEL’S CANCER #6
•	Clearly, he got substandard care.
•	But was there more going on?
•	Home care nurse thought he was getting fat because he does not exercise.
•	Diagnostic overshadowing
•	MS does cause constipation. Was abdominal distension caused by stool?
•	Severe MS can cause breathing problems.
•	No relationship between MS and hypertension.
Slide 49: Michael’s Cancer #6 Continued
•	Social worker admitted that palliation is PACE’s goal: he is so “very disabled” that, for Michael, their primary goal was “palliation” rather than active exploration and intervention as needed. Hopefully, this attitude is rare, but maybe not ...
Slide 50: Why should patients with disability need to prove to their doctor that they value the quality of their life to get equal quality care?
Slide 51: Ending Slide
•	Image: A group of fireworks in the sky