Perspectives of Patients with Pre-existing Mobility Disability on the Process of Diagnosing Their Cancer
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Health Policy Research Center-Mongan Institute, Massachusetts General Hospital, 100 Cambridge Street, Suite 1600, Boston, MA, USA; Department of Medicine, Harvard Medical School, Boston, MA, USA; 3Division of Hematology and Oncology, Massachusetts General Hospital, Boston, MA, USA.
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BACKGROUND: Mobility disability is the most common disability among adult Americans, estimated at 13.7% of the US population. Cancer prevalence is higher among people with mobility disability compared with the general population, yet people with disability experience disparities in cancer screening and treatment. OBJECTIVE: We explored experiences of patients with mobility disability with the process of cancer diagnosis. DESIGN: Open-ended individual interviews, which reached data saturation. Interviews were transcribed verbatim for conventional content analysis. PARTICIPANTS: We interviewed 20 participants with preexisting mobility disability that required the use of an assistive device or assistance with performance of activities of daily living and who were subsequently diagnosed with cancer (excluding melanoma). KEY RESULTS: Concerns coalesced around five broad categories: inaccessibility of medical diagnostic equipment affecting the process of cancer diagnosis, attitudes of clinical staff about accommodating disability, dismissal of cancer signs/symptoms as emotional responses to chronic health conditions, misattributing cancer signs/ symptoms to underlying disability, and attitudes about pursuing legal action for substandard care. Participants provided examples of how erroneous assumptions and potentially biased attitudes among clinicians interfered with the process of their cancer diagnosis, sometimes contributing to an insufficient workup and diagnostic delays. CONCLUSIONS: Physical and attitudinal barriers affect the process of cancer diagnosis in people with mobility disability. Though people with mobility disability may be clinically complex, clinicians should be aware of the risks of diagnostic overshadowing (i.e., the misattribution of cancer signs/symptoms to underlying disability) and other erroneous assumptions that may affect timeliness of cancer diagnosis and quality of care. Further efforts, including educating clinicians about challenges in caring for persons with disability, should be considered to improve the process of cancer diagnosis for this population. TRIAL REGISTRATION: N/A
Prior Presentations N/A Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s11606-020-06327-7. Received May 12, 2020 Accepted October 16, 2020
KEY WORDS: cancer; mobility disability; diagnostic overshadowing; disparities. J Gen Intern Med DOI: 10.1007/s11606-020-06327-7 © Society of General Internal Medicine 2020
INTRODUCTION
Healthy People 2020 called for eliminating barriers to healthcare for people with disability, highlighting disparities in their access to cancer screening and other preventive services.1 Mobility disability is the most common disability among adult
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