Narrative Medicine in Amyotrophic Lateral Sclerosis and a Rehabilitation Project Based on International Classification of Functioning, Disability and Health

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Abstract

Objective

The aim of the study was to systematize the disability condition related to amyotrophic lateral sclerosis patients using the International Classification of Functioning, Disability and Health (ICF) and narrative medicine approach as a common tool to identify a patient's functional problems. Once identified, this can be used as the basis for an individual rehabilitation project.

Design

This is an observational study on patients residing in a central region of Italy with a diagnosis of amyotrophic lateral sclerosis. The narrative approach involved listening to the patients' stories while guiding them with a semistructured questionnaire of 19 ICF items taken from the WHO Disability Assessment Schedule. A score from 0 to 4 for capacity (C) and performance (P) was adopted to evaluate each patient's functioning in their daily living activities.

Results

The ICF questionnaire was able to discriminate among responders (P < 0.001). The disability areas were in daily activities and social life (capacity 3–4, performance 3–4), whereas the performance items using facilitators were in the areas of communication, movement, personal care, and interaction with people (capacity 3–4, performance 1–2).

Conclusions

Narrative medicine using ICF in amyotrophic lateral sclerosis highlighted the main rehabilitation goals necessary to personalize a rehabilitation program, emphasizing the gap between capacity and performance. The environmental factors facilitating the areas of communication, movement, personal care, and interaction with people and not influencing daily activities and social life were identified.

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