Feasibility of Assessing Adolescent and Young Adult Heart Transplant Recipient Mental Health and Resilience Using Patient-Reported Outcome Measures

Background: Although adolescents and young adults may be particularly prone to mental health symptoms after heart transplant, screening practices are variable. Objective: To assess the feasibility of using patient-reported outcome (PRO) measures to assess mental health, functional sta-tus, and resiliency in posttransplant adolescents and young adult patients. Methods: Patients transplanted between ages 15 and 25 years at 3 centers completed 6 PRO in-struments via web-based platforms: PROMIS instruments for anxiety, depression, satisfaction with social roles, and physical functioning; the Posttraumatic Stress Diagnostic Scale for Diagnostic and Statistical Manual of Mental Disorders, version 5; and the Connor-Davidson Resilience Scale-10. Feasibility (completion, time to completion, and measure missingness) and PRO results were described and compared between patients with congenital heart disease and cardiomyopathy. Results: Nineteen patients (median age at transplant 17.7 y [interquartile range 16.3, 19.2 y], 84% male) were enrolled at an average of 3 & PLUSMN; 1.8 years after transplant. Enrollment was 90% among eligible pa-tients. Measure missingness was zero. The average completion time was 12 & PLUSMN; 15 minutes for all instruments. Timely PRO completion was facilitated by in-clinic appli-cation. The PRO results indicated that 9 patients (47%) had at least mild posttraumatic stress disorder symptoms ($11 points on Posttraumatic Stress Diagnostic Scale for Diagnostic and Statistical Manual of Mental Disorders, version 5). Among them, 4 patients had scores .28 sug-gestive of probable posttraumatic stress disorder. Two (11%) and 6 (32%) patients had anxious and depressive symptoms, respectively. The cardiomyopathy cohort had a higher median Posttraumatic Stress Diagnostic Scale for Diagnostic and Statistical Manual of Mental Disorders, version 5 score than that of the congenital heart disease subgroup (11.0 vs 6.0; P = 0.015). Twelve (63%) had resiliency scores that were lower than the population average. No significant differences were found in PRO re-sults between patients with cardiomyopathy and congenital heart disease apart from the posttraumatic stress disorder assessment. Conclusions: This novel PRO-based approach to psychiatric screening of adolescents and young adult pa-tients after transplant appears feasible for assessing mental health, functional status, and resiliency, with excellent enrollment and completion rates. These instruments char-acterized the burden of mental health symptoms within this adolescents and young adult heart transplant cohort, with a high prevalence of posttraumatic stress disorder symptoms. Resiliency scores were lower than in a comparison popula-tion. Electronically-administered PRO administration could facilitate more consistent mental health screening in this at -risk group.