A randomized controlled trial evaluating the effectiveness of a self-management program for adolescents with a chronic condition: a study protocol.

BACKGROUND: Self-management support is increasingly viewed as an integral part of chronic condition management in adolescence. It is well recognized that markers of chronic illness control deteriorate during adolescence. Due to the increasing prevalence of long-term chronic health conditions in childhood and improved survival rates of previously life-limiting conditions in children and adolescents, significant numbers of adolescents are having to manage their chronic condition effectively as they transition to adult health care. Therapy adherence has been identified as a major challenge for young people living with a chronic condition such as cystic fibrosis, diabetes, or asthma requiring long-term pharmacological therapy and/or lifestyle modifications. Most systematic reviews on self-management interventions address adult populations. Very few intervention studies are directed at adolescents with a chronic condition who are transitioning to adult health services. This protocol describes a prospective randomized controlled trial of a standardized self-management intervention program delivered to adolescents aged 15-18 years prior to their transfer to adult care. This study has been designed to provide evidence regarding self-management programs for adolescents and is the first study to use the Flinders Program with this important, under-researched age group. METHODS: A randomized controlled trial is used to investigate the effectiveness of a modified adolescent-friendly version of an adult self-management program. This program is directed at improving self-management in an adolescent cohort 15-18 years of age with a chronic condition being treated in a specialist pediatric hospital. Participants will be randomized to either usual care or the modified Flinders Program plus usual care. Data collection will include measures of specific illness control, unscheduled hospital admissions, and questionnaires to record self-management competencies, quality of life, self-efficacy, and outcome measures specific to the chronic condition at baseline, 3 months, 6 months, and 12 months after delivery. DISCUSSION: This study will provide a better understanding of the elements required for effective self-management programs in adolescents with a chronic condition and address some important knowledge gaps in current literature. The study will be carried out in collaboration with the Discipline of Behavioural Health at Flinders University, Adelaide, Australia, in order to inform the development of an adolescent version of the successful and validated Flinders Program™. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry (ACTRN12621000390886). Registered on April 8, 2021.

Effectiveness of self-management programmes for adolescents with a chronic illness: A systematic review.

AIM: To assess what is known about the effectiveness of face-to-face self-management programmes designed specifically for adolescents (10-19 years) with a chronic illness. DESIGN: A systematic review and synthesis without meta-analysis (SWiM). DATA SOURCES: Six international web-based reference libraries were searched with a date range of 1946 to July 2020. REVIEW METHOD: The PRISMA statement and SWiM guideline were used for reporting the methods and results. The PICO format was used to develop a focused clinical question and the eligibility criteria of our review. Quality assessment of the included studies was performed using the Cochrane Effective Practice Organisation of Care criteria. RESULTS: Eight studies (four randomized controlled trials and four descriptive designs) met the inclusion criteria and were published between 2003 and 2017. Results of the review: Three studies demonstrated measures of illness control which showed initial improvements in adherence as a result of the interventions but failed to demonstrate sustained adherence over time. Booster sessions were identified as an effective strategy to improve adherence, but were often omitted. CONCLUSIONS: There is a limited body of evidence on the effectiveness of self-management programmes specifically developed for adolescents with a chronic illness, an important but under researched area. Future research lies in the development of more rigorous studies that focus on quantitative outcome measures for evaluating the effectiveness of self-management programmes to guide the development of future programmes. IMPACT: It is crucial for adolescents with a chronic illness to develop independence and the self-management skills required to effectively manage their chronic condition as they transition to adulthood. On current evidence, in planning future self-management interventions should include booster sessions. Nurses with additional training and experience have a key role in supporting adolescents with a chronic illness to develop self-management skills as they assume responsibility for their own healthcare.