Self-care mobile application for people with Amyotrophic Lateral Sclerosis: a development and usability test.

Objective: Mobile technology can significantly enhance self-care for individuals with amyotrophic lateral sclerosis (ALS). This study aims to develop and evaluate the usability of a mobile application that provides relevant information and manages disease-related data for ALS patients and their families.

Methods: A mobile application compatible with Android and iOS platforms was developed following the four phases of the System Development Life Cycle. The content was derived from a literature review, stakeholder focus group interviews, and in-depth interviews with ALS patients, family members, and healthcare professionals. The final application was validated by experts (n = 7), tested for usability by ALS patients and caregivers (n = 18), and evaluated using the System Usability Scale (SUS) to assess effectiveness and user satisfaction.

Results: The application includes features such as tailored health data visualization, symptom tracking, text-to-speech functionality, and access to information customized based on the overall the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised score, thereby supporting patient-centered care and daily disease management. The mean SUS score was 75.00 ± 9.57 for expert panel members and 63.75 ± 10.26 for the target users, indicating an acceptable level of usability.

Conclusions: The mobile application was evaluated as practical, acceptable, and feasible for ALS patients and their caregivers, with positive feedback on its usability and potential to improve self-care management.