Brief Report
How do patients describe their disabilities? A coding system for categorizing patients' descriptions

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Abstract

Background

To provide care that meets the values and preferences of patients with disabilities, health care providers need to understand patients' perceptions and understanding of their disability. No studies have explored patients' definitions of disability within the healthcare setting.

Objective

The aim of the study was to understand how patients' define their disability in the healthcare setting and to develop a coding system for categorizing how they describe their disability.

Methods

In 2000 all new outpatients at Mayo Clinic, Rochester, MN completed a form that inquired if they had a disability and if so, to write in the disability. The research team categorized the responses by disability type (e.g.: visual or physical) and how the patient described his disability or “disability narrative” (e.g.: diagnosis or activity).

Results

Within 128,636 patients, 14,908 reported a disability. For adults, lower limb (26%) and chronic conditions (24%) were the most frequent disability type and activity limitations (56%) were the most frequent disability narrative category. For pediatric patients, developmental disabilities (43%) were the most frequently reported disability type and diagnoses (83%) were the most frequent disability narrative category. Patients used different disability narrative categories to describe different disability types. For example, most adults reporting a mental health listed a diagnosis (97%), compared to only 13% of those with lower limb disabilities.

Conclusions

Patients had diverse descriptions of their disabilities. In order for providers and healthcare organizations to provide high-quality care, they should engage patients in developing a consistent, patient-centered language around disability.

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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