Brief ReportHow do patients describe their disabilities? A coding system for categorizing patients' descriptions
Section snippets
Study cohort
Between 1999 and 2001 all new outpatient encounters at Mayo Clinic included a disability status question in the required “Patient and Family History” form. The question asked “Are you disabled?” and if the patient selected “yes”, he/she was asked to describe the disability in an open response field. All new patients during the time period received the form with the new questions. All open-ended responses were scanned into the electronic medical record and stored as an image file (pdf).
Mayo
Description of the sample
A total of 128,636 unique patients (112,997 adult and 15,639 pediatric) completed the patient and family history form in 2000. Of those patients, 108,059 (84%) reported no disability, including 94,381 (84%) adults and 13,678 (90%) pediatric patients. A total of 14,908 (12%) reported a disability, with 13,997 (12%) adults and 912 (6%) pediatric patients. Finally, 5668 (4%) did not respond to the general question, with 4619 (4%) of adults and 1049 (7%) of pediatric patients.
Of the 14,908 people
Discussion
Understanding the diverse ways that patients describe their disability may assist healthcare providers in recognizing that while two patients may have the same disability, they might perceive and define their disability differently. Understanding these differences could affect not only how a provider talks to a patient about his/her disability, but could also provide valuable information in how a patient values and perceives his/her disability, which may in turn affect the treatment plan. In
Conclusions
Future research should engage patients in developing and defining disability status questions for the healthcare setting. Understanding and considering how patients define their own disability will provide a common language for patients and health care providers, potentially resulting in better care and appropriate accommodation during clinical encounters.
Fundings
The research was completed with support from the Mayo Clinic Robert D. and Patricia E. Kern Center for Healthcare Delivery. Mr. Halverson's time was supported in part by the Wenner-Gren Foundation and the Hanna Holborn Gray Mellon Fellowship.
Conflicts of interest
None of the authors have any conflicts of interest to disclose.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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2020, Disability and Health JournalCitation Excerpt :This is a higher proportion than a study conducted of 128,636 new outpatients at Mayo Clinic, Rochester, MN who were surveyed using the question ‘Are you disabled?’ where 11.6% responded ‘yes’.28 The difference is most likely as a result of how our question was worded.
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