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

Megan A Morris1, Jonathan Inselman2, Julie M G Rogers3

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Patients describe their disabilities differently. Understanding these diverse patient narratives is crucial for healthcare providers to deliver personalized care that aligns with patient values and preferences. This study developed a system to categorize these descriptions.

Keywords:
Documenting disabilityHealthcarePatient-centered care

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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.