Assistive devices for ALS patients: exploring wishes and values through focus groups

Purpose: Amyotrophic Lateral Sclerosis (ALS) is a progressive disease leading to loss of muscle strength and control, and as such limiting patients’ independence. Assistive devices can help individuals with ALS; however, their use by ALS patients is limited. To increase use rates, we expect that devices need to be tailored to ALS patients. The aim of this study was to identify wishes, requirements and values of ALS patients regarding assistive devices for the upper extremity through focus groups involving ALS patients, their relatives and medical professionals.

Methods and Materials: Four focus groups were conducted, recorded and transcribed. Two focus groups with ALS patients and their relatives contained a “Day in a Life” and “Empathy map” method, while during two focus groups with medical professionals, “Day in the Life” method and “Provoking statements” were used. Activities mentioned were counted and categorized into “Daily activities” and “Elective activities”.

Results: Qualitative analysis of transcripts yielded three themes: (1) ALS patients’ considerations on use and wishes for assistive devices, (2) external factors influencing the use of assistive devices and (3) change in ALS patients’ needs over time. In addition to maintaining independence in activities of daily living, the results highlight that retaining the ability to perform elective activities such as hobbies, is important. Moreover, there is a clear need for assistive devices designed for ALS patients with limited upper extremity strength, but who are not confined to a wheelchair.

Conclusion: These findings can guide the development of assistive devices tailored to the needs of ALS patients.