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

Area of Science:

• Healthcare delivery
• Patient-centered care
• Disability studies

Background:

• Healthcare providers require an understanding of patients' disability perceptions for effective care.
• No prior studies have explored patients' definitions of disability within a healthcare context.

Purpose of the Study:

• To understand how patients define their disability in healthcare settings.
• To develop a coding system for categorizing patient-described disabilities.

Main Methods:

• Utilized data from new outpatients at Mayo Clinic starting in 2000.
• Patients self-reported disability status and provided written descriptions.
• Responses were categorized by disability type and narrative (e.g., diagnosis, activity).

Main Results:

• 14,908 of 128,636 patients reported a disability.
• Adults most frequently reported lower limb (26%) and chronic conditions (24%), with activity limitations (56%) as the primary narrative.
• Pediatric patients most often reported developmental disabilities (43%) with diagnoses (83%) as the primary narrative.

Conclusions:

• Patient descriptions of disability are diverse.
• Healthcare providers and organizations should collaborate with patients to establish consistent, patient-centered language regarding disability.