Exploring Self-management Needs of Persons With Multiple Sclerosis: A Qualitative Study for Mobile Application Development

Abstract

Background: Multiple sclerosis (MS) is a common cause of neurologic disability in young adults. Individuals with MS deal with the day-to-day effects of the disease on their lives. Self-management can help with these challenges. This study aimed to explore MS self-management needs according to experiences of persons with MS and was conducted as part of a research project to develop an MS self-management mobile application. Methods: We used a qualitative method to elicit self-management needs among 12 individuals with MS and conducted semistructured interviews with them. The participants were chosen based on snowball sampling. The interviews were recorded and transcribed verbatim. Finally, qualitative data were analyzed using a content analysis method (inductive way) to identify the underlying themes and subthemes. Results: The analysis resulted in the emergence of seven themes: the source of information, basic needs, understanding MS, physical exercises in MS, useful nutrition in MS, MS monitoring, and communication. Within these seven themes we identified 23 subthemes. Conclusions: The themes that emerged in this study show what needs are essential to help persons with MS improve their self-management capacity. These findings can help in the development of self-management mobile applications for supporting individuals in managing MS.

A mobile app (IDoThis) for multiple sclerosis self-management: development and initial evaluation

“…The expected and necessary functionalities of the app were determined and finalized according to the results of our previous studies [ 27 , 28 ] and the final content of the app was defined. The use-case diagram was deployed to model, present, and analyze the application's essential functionalities using Rational Rose software version 8 and UML language.…”

“…Mobile content is defined as any form of media (pictures, music, text, videos) contained in mobile apps for the mobile device (cell phone or tablet) [37]. The initial content was prepared after extracting MS self-management needs based on the information available in guidelines and guides, paying attention to the results of our two previous studies in the field of existing apps for MS selfmanagement and extracting needs by interviewing MS patients [27,28]. First, the researchers searched websites of MS international organizations and accredited associations to retrieve MS self-management authoritative guides and guidelines.…”

“…These studies have highlighted limitations of the apps in terms of their functionality, their supply and demand mismatch, their failure to meet some of the self-management needs, the gap in the collaboration of patients and health care providers in apps development, and the current gap between MS selfmanagement needs and existing apps [19,20,[23][24][25][26]. In our previous study, the self-management needs of people with MS were elicited from a series of semi-structured interviews, which revealed the themes ranging from information needs of people with MS (awareness of MS from reliable sources, solutions for adaptation to MS, awareness of valuable exercises and beneficial foods in MS), aspects that should be monitored for MS management (MS symptoms, rest status, and stress status), and communications needs of people with MS (communication with specialists and optimistic people with MS) [27]. Also, results from our other study characterized several apps developed for MS (n = 104) with a variety of purposes ranging from diagnosis to treatment, tests, self-management, communication for MS patients, awareness-raising, access to journals and news, conferences & meetings, and supporting & donating to the MS community [28].…”

The psychometric properties of the Persian version of the Multiple Sclerosis Self‐Management Scale‐Revised: A cross‐sectional methodological study

“…3 MS is associated with different physical, mental, and social symptoms and problems. 7,8 Currently, there is no effective treatment for MS. Given the early onset age and chronicity of the disease, selfmanagement (SM) is one of the most important strategies for MS management, 9 symptom alleviation, 10 and patient empowerment.…”

“…9,11,12 SM in a chronic disease is an approach through which patients can be empowered to manage their health status. 7 SM strategies such as better disease understanding, enhancement of disease-related knowledge, adherence to dietary regimen and healthy eating, and improvement of disease management skills can improve patient health and reduce disease consequences. 13 The pwMS can play significant role in the management of their disease far from expectations.…”