Cases in Health Disparities: Patients in Wheelchairs -- Are They Getting to Your Office?

Désirée Lie, MD, MSEd

Disclosures

September 15, 2010

Commentary

Today, the most prominent scheme for classifying disability is the International Classification of Functioning, Disability and Health approved by the World Health Organization in 2001.[1] Disabilities cover a wide range of conditions and hierarchies. Persons with mental illness are considered at greatest disadvantage, followed by those who are deaf or hard of hearing; persons with physical or visual impairment are believed to have the greater political, social, and economic opportunities 2] In the United States, despite passage of the Americans With Disabilities Act of 1990,[3] the healthcare system falls short of the goal of reducing the impact of illness, injury, and disability as described by Lawthers and colleagues.[4] This is true because of inadequate access (poor insurance coverage for needed items, assistive devices and services) exacerbated by environmental barriers, such as lack of ramps or proper medical equipment for disabled persons. Lawthers and associates characterize the barriers as follows:

  • Physical and transportation;

  • Access to assistive technology and equipment;

  • Access to medications and specialists;

  • Access to personal care attendants; and

  • Access to financing.

All of these require coordination and systemic adaptation to overcome.

Insurers, such as Medicaid and Medicare, limit coverage of services and devices for restoring function, including long-term physical and occupational therapy and home modifications.[5] A variety of reasons has been proposed for the persistence of health disparities associated with disabilities, such as the attitude of health professionals and inadequacy of policies addressing the needs of the disabled as well as lack of enforcement of existing policies.[6]

Prevalence

Disabilities are prevalent among both the elderly and younger populations. For example, among 16,403 community-dwelling Medicare beneficiaries, 1 study found a prevalence of 64.1% of elderly beneficiaries reporting at least 1 disability and 29.5% reporting more than 1 disability.[7] While 98% of all beneficiaries reported that their physicians were competent and well-trained, among those with major disabilities the odds of reporting dissatisfaction were 2.4 for "physician understanding their condition"; 2.4 for "physician completely discussing their health problem"; 2.3 for "physician answering all questions"; and 1.6 for "physician always seeming hurried," suggesting poorer communication and lack of thorough care in disabled persons. The odds of being dissatisfied about quality of care, access to specialists, and getting to doctors were also increased.[8]

Mobility Challenges: Incidence and Consequences

Although mobility problems are commonly associated with old age and chronic diseases, such as multiple sclerosis, a 2001 study of noninstitutionalized US adults found that 19 million Americans (10.1%) who were 59-67 years of age reported mobility challenges and 32% reported that the problem started at 50 years or younger, with higher rates in women than in men (11.8% vs 8.8%) and in African Americans than in whites (15.0% vs 10.0%).

Among those with major mobility problems, 30.6% reported being frequently depressed or anxious compared with 3.8% of those without mobility problems.[9] Women with major mobility problems (such as those who use wheelchairs or scooters) have been reported to be less likely to receive a Pap smear than women without mobility problems (63.3% vs 81.4%; odd ratio, 0.6)[10] and less likely to have had a mammogram in the past 2 years (45.3% vs 63.5%; odd ratio, 0.7).

Disabled women with breast cancer are less likely to receive radiotherapy following breast-conserving surgery than nondisabled women and had higher mortality.[11]Also, poorer outcomes of care for breast cancer are reported for women with disabilities.[12]

In a survey of California residents with disabilities (n = 1333), 22% reported difficulty accessing clinicians' offices and 13% felt that they had been treated unfairly because of their disability.[13]

Changes in Policy and Education?

Healthy People 2010, which sets national priorities for health equity, has also documented lower levels of health and disease promotion for people with disabilities.[14] Many objectives to eliminate barriers to healthcare for people with disabilities have been preserved in the new Healthy People 2020 goals because they have not, to date, been adequately addressed.[15] The US Surgeon General has also advocated for improving health equity for disabled persons.[16]

Physician Biases

Disability has been proposed as an attribute (like race, gender, or cultural background) that should fall under the domain of "cultural competence" for physician training and communication.[17,18,19] Physicians have been noted to be biased by beliefs that patients with disabilities have poor quality of life, need to "be fixed," or are dependent on others for care.[16] Hearing impairment or dysarthric speech, for example, have sometimes been interpreted as impaired cognition by physicians.[19] Such biases have an adverse impact on patients and their trust in the physician-patient partnership because the physician undervalues and ignores the disabled patient's views and preferences.

Many persons with long-term disabilities do not perceive their condition as a problem or "pathology" and expect the same level of healthcare as those without disabilities; they also report similar satisfaction and happiness with their life as those without disabilities.[20] Assumptions, for example, that persons with disabilities are not sexually active or do not care about their appearance are not only erroneous, they can lead to misdiagnosis and poor health outcomes.[19]

Ask the Patient

Accommodations by physicians to improve outcomes of care for those with disabilities should begin with adequate time spent in the encounter and excellent communication addressing the patient's needs (and not just the disability), including wellness issues. Asking patients about their expectations of the healthcare encounter and of prevention and wellness strategies aids decision-making about recommended procedures and tests. That approach also serves to identify the patient's fears and perceived barriers to wellness and prevention practices.

While it is important to screen for symptoms and signs of depression and anxiety, it is also important not to assume that patients with disabilities are depressed or anxious. Respecting the patient's autonomy and dignity (as with all patients) involves asking "need to know" rather than "want to know" questions, highlighting the person first rather than defining the person by the disability.[20]

Structural accommodations that improve care include adjustable examination tables and ramps.[21] Access issues also include scheduling longer appointments and seeking alternative sources of financing for some needs.[22] If the family is involved in care, the physician should show respect for the family's efforts to advocate for resources for the patient and value and acknowledge the patient and family's vision of shared interdependence or full independence for the patient, rather than assume that the patient is dependent.[19]

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