Recommendations on Standards for the Design of Medical Diagnostic Equipment for Adults with Disabilities, Advisory Committee Final Report

2.2 Evidence of Physical Accessibility Barriers

A growing number of research publications document physical access barriers involving MDE, including reports concerning: individual patients;^7-9 findings from focus groups, in-depth individual interviews, or surveys of relatively small numbers of patients^10-21 or practitioners;^{18, 22} and several larger studies^.23-25 One challenge with identifying specific accessibility barriers is the extreme diversity of persons with disabilities and complexity of health care delivery system settings.^{26, 27} Nonetheless, the group and individual interview studies give voice to the experiences of persons with disabilities, offering insights into their often-shared experiences of physical access barriers involving medical equipment in both diagnosis and treatment settings.^7-20

For example, in a study of 20 women with significant mobility difficulties who subsequently developed early-stage breast cancer, women described various strategies for getting onto fixed-height examination tables.¹¹ Several women dismissed as unhelpful step stools or the step built into fixed height tables, including a woman with paraplegia from the long-term effects of childhood polio:

I can’t use the little thing they pull out for you to step up on. No, no, no, that doesn’t work for me. I have to go on the side … in the middle of the table. I belly flop on the table and use my arms to pull me so my body is [lying across the table]. Then I take my arm and lift the leg with the brace … up on the table, and the other one will follow with my body as I try to turn over. Of course, everyone is scared to death that I’m going to fall off the other side. … Mind you, I’m still on my stomach. Now I’m shifting so my head is going towards the top of the table. … Now I’m lengthwise, but I’m on my stomach, so I’ve got to turn over.¹¹

Women reported needing assistance getting onto inaccessible equipment, such as a woman with spinal cord injury who was lifted onto examining tables “by either a couple of nurses or some guys in the hallway.”¹¹ A woman with multiple sclerosis would “usually just ask someone to lift my feet up and to stabilize whatever I’m transferring to if it doesn’t look stable.” Another woman with rheumatoid arthritis said, “I’m afraid of people grabbing me the wrong way. So I have to be careful, and I have to tell them how to handle me.” One woman with cerebral palsy described her staff-assisted transfer onto the examining table as “very awkward and very hard. I had a couple of doctors and nurses. One nurse … strained her back when she was trying to help me get up on the table. I really felt bad about that.”

Most troubling, studies have found that sometimes patients are not transferred onto examination tables for complete physical examinations: instead clinicians examine patients who remain seated in their wheelchairs or scooters. While sometimes this might be reasonable (e.g., if the patient has a condition that does not require complete physical examination), in many situations such limited examinations represent substandard care. For example, in the breast cancer study, physicians often examined women who remained seated in their wheelchairs.¹¹ This represents poor quality care, ^F as a woman disabled by polio who uses a scooter observed:

Even when I go to my oncologist, he will say, “Oh, don’t bother to get on the table. Just sit in the chair.” Well, I don’t feel I can get an adequate breast examination ... from that particular doctor without being able to ... lay down.¹¹

One woman’s breast surgeon, during their first appointment, said he would examine her in her wheelchair.¹¹ But the woman insisted on being moved to an examining table for a complete evaluation. The surgeon “and this other person lifted me onto the table, but I had to ask to have the breast exam on the table.” These types of stories raise questions about whether diagnoses are delayed by inadequate physical examinations. One woman, who is quadriplegic from polio, reported that her primary care physician always refused to get her out of her wheelchair and instead examined her as she remained seated.¹⁴ When she visited a gastroenterologist for inflammatory bowel disease, that physician conducted a complete physical examination with her supine on an exam table. As the woman’s husband observed, the gastroenterologist ‘‘was basically filling in as her primary care.’’ The woman described how her breast cancer was detected: ‘‘He [the gastroenterologist] was examining me, and he went, ‘Uh-oh.’ ‘Uh-oh, what?’ ‘I found a lump.’ So that’s when we found the lump.’’¹⁴

No nationally-representative studies have reported on MDE accessibility barriers across the range of health care delivery systems (e.g., private physician offices, health centers, hospital clinics, public health facilities, urgent care centers, practices of other health care professionals such as nurse practitioners, physician assistants, and rehabilitation therapists). Several larger studies give a sense of the prevalence of selected physical access barriers. Although not specific to MDE, one round of the biennial Los Angeles County Health Survey offers prevalence estimates of physical access barriers to health care offices.²³ This random-digit-dialed telephone survey of adult (age >18 years), non-institutionalized residents of Los Angeles County occurred from October 2002 through February 2003, with interviews conducted in English, Spanish, and four Asian languages. Of the 14,154 eligible adults contacted, 8,167 (57.7%) completed the telephone interview. Persons who answered “yes” to at least one of three questions about impairments expected to last 3 months were considered disabled.^G The survey asked about five barriers to participation in community life, including health care.^H Among individuals reporting sensory or physical disabilities, 22.0% indicated difficulty accessing offices of health care providers because of its physical layout or location. Among non-Hispanic respondents, blacks were significantly more likely than whites to report access barriers (33.0 versus 14.4%). Persons with the most severe disabilities reported significantly more difficulties than did persons with the least severe disabilities (30.9 versus 13.8%). Commenting on these results, which appeared in their publication, the editors of Morbidity and Mortality Weekly Report from the CDC noted, “Accessibility to offices of healthcare providers could be improved by lowering service counters and examination tables and ensuring that scales are wheelchair accessible.”²³

Another report from California provides perhaps the most specific information about the prevalence of physical access barriers, including MDE. Mudrick and colleagues analyzed findings from a 55-item instrument that assessed medical office or clinic parking, exterior access, building entrances, interior public spaces, doctor's office interiors, and the presence of accessible examination equipment.²⁴ Using this instrument, 5 health plans serving California Medicaid patients conducted reviews of providers that had signed with their plans. These data were merged across plans for analysis. With the exception of van accessible parking (which was inadequate), parking, exterior access, building access, and interior public spaces generally complied with the access criteria. However, barriers were found frequently in bathrooms and examination rooms. In particular, only 3.6% of the sites had an accessible weight scale, and just 8.4% had a height adjustable examination table.²⁴

To learn about the accessibility of medical and surgical subspecialist practices for patients who use wheelchairs, Lagu and colleagues conducted a “secret shopper”-type telephone survey.²⁵ The researchers called subspecialty offices ostensibly to make an appointment for a fictional patient with hemiparesis who was obese, used a wheelchair, and could not self-transfer from the wheelchair chair to an examination table. They spoke with 256 endocrinology, gynecology, orthopedic surgery, rheumatology, urology, ophthalmology, otolaryngology, and psychiatry practices in 4 U.S. cities and asked about the accessibility of the practice, reasons for lack of accessibility, and the planned method of transfer of the patient to an examination table. Of the 256 practices, 56 (22%) reported that they could not accommodate the patient; 9 (4%) indicated that their building was inaccessible; and 47 (18%) said they could not transfer the patient from the wheelchair to an examination table. Only 22 (9%) reported use of either a height-adjustable examination table or a lift for transfer. Among the various specialties, gynecology had the highest rate of inaccessible practices (44%).²⁵

Notes

^F The clinical breast exam requires clinicians to palpate the entire breast, its perimeter, and immediately adjacent areas including the axilla (e.g., checking for lymph nodes). The breast tissue must be spread evenly over the chest wall, which requires women to be supine. With the woman lying flat on her back on an examination table, positioning her arm toward her head and rotating her hip and torso can assist in spreading the breast tissue.

^G (1) “Are you limited in any way in any activities because of a physical, mental, or emotional problem?” (2) “Do you now have any health problems that require you to use special equipment such as a cane, a wheelchair, a special bed, or a special telephone?” and (3) “Do you consider yourself a person with a disability?”²³ Those classified as having a disability were then asked about whether their disability was physical, sensory, mental, or learning (they could report more than one type) and whether their disability was slight, moderate, or severe (based on their own perceptions).

^H (1) Experiencing restricted social activity. (2) Not knowing where to obtain disability resource information. (3) Needing home modifications but not having them. (4) Having difficulty accessing a health care provider’s office because of its physical layout or location. (5) being treated unfairly at a health care provider’s office.²³

Section 2: References

^7. Andriacchi R. Primary care for persons with disabilities. the internal medicine perspective. Am J Phys Med Rehabil. 1997;76(3 Suppl):S17-20.

^8. Iezzoni LI. Blocked. Health Aff (Millwood). 2008;27(1):203-209. doi: 10.1377/hlthaff.27.1.203.

^9. Kirschner KL, Breslin ML, Iezzoni LI. Structural impairments that limit access to health care for patients with disabilities. JAMA. 2007;297(10):1121-1125.

^10. Drainoni M, Lee-Hood E, Tobias C, Bachman SS, Andrew J, Maisels L. Cross-disability experience of barriers to health-care access: Consumer perspectives. Journal of Disability Policy Studies. 2006;17(2):101-115.

^11. Iezzoni LI, Kilbridge K, Park ER. Physical access barriers to care for diagnosis and treatment of breast cancer among women with mobility impairments. Oncology Nursing Forum. 2010;37(6):711-717.

^12. Iezzoni LI, Killeen MB, O'Day BL. Rural residents with disabilities confront substantial barriers to obtaining primary care. Health Serv Res. 2006;41(4 Pt 1):1258-1275.

^13. Iezzoni LI, O'Day BL. More than Ramps. A Guide to Improving Health Care Quality and Access for People with Disabilities. New York: Oxford University Press; 2006.

^14. Iezzoni LI, Park ER, Kilbridge K. Implications of mobility impairment on the diagnosis and treatment of breast cancer. Journal of Women's Health. 2011;20(1):45-52.

^15. Kroll T, Jones GC, Kehn M, Neri MT. Barriers and strategies affecting the utilisation of primary preventive services for people with physical disabilities: A qualitative inquiry. Health Soc Care Community. 2006;14(4):284-293.

^16. Lishner DM, Richardson M, Levine P, Patrick D. Access to primary health care among persons with disabilities in rural areas: A summary of the literature. J Rural Health. 1996;12(1):45-53.

^17. Mele N, Archer J, Pusch BD. Access to breast cancer screening services for women with disabilities. J Obstet Gynecol Neonatal Nurs. 2005;34(4):453-464.

^18. Morrison EH, George V, Mosqueda L. Primary care for adults with physical disabilities: Perceptions from consumer and provider focus groups. Fam Med. 2008;40(9):645-651.

^19. Scheer JM, Kroll T, Neri MT, Beatty P. Access barriers for persons with disabilities: The consumer's perspective. J Disabil Policy Stud. 2003;14(4):221-230.

^20. Smeltzer SC, Sharts-Hopko NC, Ott BB, Zimmerman V, Duffin J. Perspectives of women with disabilities on reaching those who are hard to reach. J Neurosci Nurs. 2007;39(3):163-171.

^21. Story MF, Schwier E, Kailes JI. Perspectives of patients with disabilities on the accessibility of medical equipment: Examination tables, imaging equipment, medical chairs, and weight scales. Disabil Health J. 2009;2(4):169-179.e1.

^22. Bachman SS, Vedrani M, Drainoni M, Tobias C, Maisels L. Provider perceptions of their capacity to offer accessible health care for people with disabilities. J Disabil Policy Stud. 2006;17(3):130-136.

^23. Centers for Disease Control and Prevention. Environmental barriers to health care among persons with disabilities, Los Angeles county, California, 2002-2003. Morbidity and Mortality Weekly Report. 2006;55(48):1300-1303.

^24. Mudrick NR, Breslin ML, Liang M, Yee S. Physical accessibility in primary health care settings: Results from california on-site reviews. Disabil Health J. 2012;5(3):159-167.

^25. 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.

^26. Story MF, Winters JM, Lemke MR, et al. Development of a method for evaluating accessibility of medical equipment for patients with disabilities. Appl Ergon. 2010;42(1):178-183.

^27. Story MF, Kaile JI, MacDonald C. The ADA in action at health care facilities. Disabil Health J. 2010;3:245-252.