Feasibility and first clinical effects of a live self management program for young adolescents with a rheumatic disease

Abstract

Objective: The primary objective of this study is to determine the feasibility of the newly developed live self management program, in order to improve and adjust the program if necessary and implement the program in daily practice. Secondary aim is to assess the first clinical effects of the ‘live’ self management program in young adolescents which completed the program. Method: Ten young adolescent patients voluntarily took part in the live self management program and accompanying study. All four peer-leaders took part in the feasibility part of this study. Data was collected on demographics, feasibility, self efficacy, self management and quality of life, at baseline and 10 day follow-up. Results: Feasibility of the program was highly agreed on by both young adolescents participating in the program as by the peer-leaders giving the program. There were recommendations on sports and exercise activities and on the content of the healthy nutrition topic. At follow-up self efficacy had improved with statistical significance (P = 0.024), self management showed improvement on several domains, but only emotional well being on a statistical significant level (P = 0.024). In quality of life measurement no significant changes were show on the Dutch HAQ-DI. Diaries on pain, fatigue, global health and disease activity showed improvement, though not significantly. Conclusion: The live self management program seems to be a suitable intervention for young adolescents with a rheumatic disease, to work on their self management skills, and thus, improving those skills, for beneficial effects on carrying out treatment and daily living, in addition to the usual care. Furthermore, the live self management program seems to improve self efficacy in young adolescents with a rheumatic disease.