Adolescents taking charge: Early findings from a nurse-led self-management randomized controlled trial

Background: Self-management support is a key component of chronic condition care in adolescence; a period often associated with declining health related to nonadherence. As the prevalence of childhood chronic conditions increases, it is important for adolescents with a chronic condition to develop effective self-management skills to enhance autonomy and long-term health outcomes prior to their transition to adult services. However, despite extensive research in adult populations, there is a lack of intervention studies targeting adolescents with chronic conditions during healthcare transition, underscoring an important gap in the literature. 
Objective: This study aims to evaluate the effectiveness of a modified adult chronic condition self-management program directed at improving self-management in adolescents with a chronic condition receiving care in a tertiary paediatric hospital setting, compared to those receiving standard care within the same setting.
Methods: This is an ongoing longitudinal randomised control trial, conducted across the two hospital campuses of the Sydney Children’s Hospital Network in Sydney, Australia. The intervention is delivered to adolescents aged 15-18 years with a physical chronic condition, who were referred by their primary treating team. The intervention group receive a 12-month nurse-led modified version of the Flinders Program plus standard care; the waitlist control group received standard care for six months before crossing over to the intervention group. The intervention is delivered individually, using a combination of face-to-face and telehealth modalities, with follow up sessions at three months, a booster session at six months and, final follow up session at 12-months from commencement. 
Results: Preliminary analyses included 11 participants (intervention, n=4; control, n=7) recruited from December 2021 to June 2024 who completed baseline, three month, and six month assessments; seven completed the full 12-month trial. For the primary outcome, a chi-square test showed a 25% improvement in response to the intervention measured by quantitative condition specific validated markers of improvement in illness control. Compared with controls, the intervention group demonstrated significant improvements in treatment adherence (p=.02) and recognition of signs and symptoms (p=.02) at three months, and greater improvement in coping with their chronic condition at six months, as measured by the Partners In Health Scale (p=.02). No other significant between-group differences were observed (ps > .05).  
Conclusions: To our knowledge this is the first longitudinal 12-month follow up randomised controlled trial using the Flinders Program in an adolescent cohort with a physical chronic condition in a tertiary paediatric hospital setting. Preliminary findings from this ongoing trial suggest that this individualised, developmentally appropriate self-management intervention can be integrated into a paediatric hospital setting and may assist with developing autonomy, improving therapy adherence and self-management outcomes compared with routine care services.

Dr Jaunna Gauci is a Clinical Nurse Consultant in the Department of Adolescent Medicine at the Children’s Hospital at Westmead in Sydney, Australia. She works in the Complex Adolescent Clinic and the Adolescent Bladder Clinic and leads research in a nurse-led self-management clinic. Her PhD research focuses on self-management of adolescents with a chronic condition transitioning to adult care.