Assessment of the "MND-Prism" smartphone application as a tool for self-management.

Abstract

Background: Motor Neurone Disease (MND) is a progressive neurodegenerative disease requiring complex, multidisciplinary care. Digital tools, including smartphone applications, offer innovative solutions to streamline self-management and care coordination for patients and caregivers. Here we evaluate the usability and value of the MND-Prism smartphone application as a tool for addressing the self-management and organizational needs of people living with MND (plwMND).

Methods: A mixed-methods approach was used to assess MND-Prism within an Australian cohort (n = 31) of plwMND, and their informal and professional carers. Quantitative data included deidentified usage statistics and Mobile Application Rating Scale (uMARS) survey results. Semi-structured interviews (n = 11) provided qualitative insights into user experiences and perspectives.

Results: Usage data highlighted varying engagement with MND-Prism functions. uMARS evaluations show above-average satisfaction across engagement, functionality, information, and esthetics, though customization and accessibility scored lower. Five themes were generated from semi-structured interviews with MND-Prism users: Purpose and value, functionality, future needs and monitoring progression, access, and information.

Conclusion: MND-Prism shows potential as a self-management tool for MND, addressing critical organizational challenges in care. Participants identified both positive aspects and areas for improvement, particularly in accessibility, customization, and carer integration. These findings provide a foundation for further development and evaluation, ensuring that applications like MND-Prism are responsive to the diverse and evolving needs of the MND community. Future research should validate these findings in larger, more diverse populations and assess the long-term role of digital tools in care coordination and support.