Preferences and needs of patients with a rheumatic disease regarding the structure and content of online self-management support

Abstract

Objective: Aim of this study was to investigate preferences and needs regarding the structure and content of a person-centered online self-management support intervention for patients with a rheumatic disease.

Methods: A four step procedure, consisting of online focus group interviews, consensus meetings with patient representatives, card sorting task and hierarchical cluster analysis was used to identify the preferences and needs.

Results: Preferences concerning the structure involved 1) suitability to individual needs and questions, 2) fit to the life stage 3) creating the opportunity to share experiences, be in contact with others, 4) have an expert patient as trainer, 5) allow for doing the training at one's own pace and 6) offer a brief intervention. Hierarchical cluster analysis of 55 content needs comprised eleven clusters: 1) treatment knowledge, 2) societal procedures, 3) physical activity, 4) psychological distress, 5) self-efficacy, 6) provider, 7) fluctuations, 8) dealing with rheumatic disease, 9) communication, 10) intimate relationship, and 11) having children.

Conclusion: A comprehensive assessment of preferences and needs in patients with a rheumatic disease is expected to contribute to motivation, adherence to and outcome of self-management-support programs.

Practice implications: The overview of preferences and needs can be used to build an online-line self-management intervention.

Keywords: Content; Needs; Patients; Preferences; Rheumatic diseases; Self-management; Structure.