Needs, Experiences, and Views of People With Rheumatic and Musculoskeletal Diseases on Self-Management Mobile Health Apps: Mixed Methods Study

Abstract

Background Despite the growing interest and exponential popularity of mobile health (mHealth) apps for long-term conditions such as rheumatic and musculoskeletal diseases (RMDs) and their self-management, patients are rarely directly consulted and involved in the app development process. Objective This study aims to explore the needs, experiences, and views of people diagnosed with RMDs on mHealth apps. Methods The study used a mixed methods approach: (1) an initial qualitative phase via a patient focus group in the UK and (2) a survey disseminated through national organizations for patients with RMDs across European countries, the United States, Canada, and Australia. Results The focus group included six patients with life-long musculoskeletal conditions. Half had used a self-management app at least once. The use of existing apps was reported as time-consuming due to a lack of functionality. The need for bespoke apps was voiced by all participants. Among 424 patients across European countries, the United States, Canada, and Australia, the main age group was 45 to 54 years (122/424, 28.7%), and 86.8% (368/424) were women. Half of the respondents were aware of the existence of apps to support self-management of their RMDs (188/355, 53%), with 42% (79/188) of them currently using such devices. Patients were mostly interested in an app to self-monitor their health parameters (259/346, 74.9%) and disease activity (221/346, 63.9%) or communicate directly with their health care provider (200/346, 57.8%). Conclusions Patients considered that using an app could help them to self-manage their RMD condition if it was tailored to their needs and co-developed with health professionals. The development of such apps will require standardization and regular quality control.

EULAR points to consider for the development, evaluation and implementation of mobile health applications aiding self-management in people living with rheumatic and musculoskeletal diseases

“…For example, they have been useful tools to facilitate the calculation of disease activity scores, and monitor patients through the collection of clinical and laboratory parameters 10. A survey performed among people living with RMDs (429 respondents) revealed that around 50% were aware of the existence of such apps 11. This corresponds with previous works performed in different specialties.…”

“…Financial affordability was discussed during the TF meeting. In our survey, the majority of people living with RMDs did not wish to pay for the apps 11. It was agreed by the TF that cost should be limited as much as possible, to remain affordable.…”

“…We first conducted a patient focus group in the UK, the findings of which informed the design of an international patient survey. This survey provided wider insights into the needs, views, experiences and preferences in mHealth apps to aid self-management among people living with RMDs 11. This preparatory material was used as a basis for the formulation of the draft recommendation list by the TF steering group (fellow, convenor, comethodologists).…”

Mobile Health Usage, Preferences, Barriers, and eHealth Literacy in Rheumatology: Patient Survey Study

“…To our knowledge, this is the first work depicting a German mHealth patient perspective in rheumatology. This work may inform mHealth policy recommendations and adds to the growing body of eHealth rheumatology knowledge [ 11 - 14 , 24 , 25 ] by providing detailed patient preferences, needs, and barriers. Hence, we believe that the results of this study could help in devising mHealth solutions that can be integrated into the clinical routine of patients with rheumatic diseases.…”

“…Patients demanded clear recommendations from the national society for rheumatology and expressed the highest confidence in an app developed by a rheumatic disease scientific society [ 25 ]. Our results suggest that patient app entries should take no longer than 15 minutes and should not be requested more often than weekly.…”