Results of CHASM IN ACHD (peer CoacHing Adaptive Self-Management INterventions for young Adults with Congenital Heart Disease) study

Background Adolescents and young adults (AYA) with congenital heart disease (CHD) are frequently lost to follow-up during their transition years. Successful transition requires navigating developmental changes while simultaneously building self-management abilities. Psychosocial supports are essential, with peer support approaches being particularly relevant given the importance of peer relationships during this developmental period. Purpose A pilot study was performed to evaluate the impact of a 6-month peer coaching intervention designed to promote independent self-management skills for AYAs with CHD on top of standard medical education. Methods AYA (18-26 years) with CHD treated at a single US academic medical center were randomly assigned (1:1) to education and 6-month coaching intervention or education only. All patients received standard education and supplemental materials about their disease process, various forms of self-care and the importance of regular follow-up. The coaching intervention additionally utilized young adults with CHD as coaches to deliver support via phone and texting. Coaches received 50 hours of initial training followed by ongoing supervision. Coaching sessions occurred weekly for the first month, then biweekly for months 2-6. Questionnaires including the partners in health (PIH) and TRAQ (transition readiness assessment questionnaire) were collected at baseline and after 3 and 6 months. Longitudinal follow-up was continued for 18 months after the intervention and loss to cardiology follow-up was defined as no subsequently scheduled adult or pediatric cardiology visits. Results 31 AYA were randomized (16 peer-coaching and 15 controls) and all successfully completed the study. Age at enrollment was 20±2.2 years and 65% were women. 23% reported anxiety or depression at entry and 13% were followed by psychiatry. 90% were in NYHA Class I and CHD complexity was simple/moderate/complex in 45/35/19%, with no differences present in any demographic features between groups. The PIH self-management median scores improved from 76.0 at entry to 86.5 at 6 months in the intervention group (p=0.001), but showed no significant change in the control arm (75.0 to 81.0, p=0.10). Scheduled adult congenital clinic follow-up occurred in 47% of the intervention arm vs. 19% of controls, p=NS, and loss to follow-up occurred in 25% of intervention arm vs. 47% of controls, p=NS. Conclusion(s) Peer coach mentoring in transition-aged patients with congenital heart disease can be safely implemented in addition to appropriate education, improves self-management skills and may result in more successful patient transitions and less loss to follow-up. Larger studies should be performed to identify which patients may best benefit from this intervention.