The Use of Patient-Reported Outcomes to Screen for Underrecognized Psychiatric Co-Morbidities in Adolescent and Young Adult Cardiac Transplant Recipients

Purpose For adolescents and young adults, receiving a heart transplant is a profoundly challenging experience. This pilot study examined the burden of psychiatric co-morbidities and resiliency factors in post-transplant patients using patient-reported outcomes (PRO). Methods Patients transplanted between ages 15-25 years at one of three tertiary care centers were asked to complete six PRO measures—PROMIS® measures to assess depression, anxiety, satisfaction with social roles (SSR), and physical functioning (PF); Posttraumatic Stress Diagnostic Scale for DSM-5 (PDS-5) for Posttraumatic Stress Disorder (PTSD); and the Connor-Davidson Resilience Scale-10 for resiliency. Formal psychiatric diagnoses and demographics were collected retrospectively from chart review. Comparisons were made between PRO measures and formal diagnoses, with further comparison between those transplanted for congenital heart disease (CHD) and cardiomyopathy (CM). PROMIS® scores were dichotomized at their literature-reported cutoffs for depression and anxiety. Fisher's exact test, McNemar's test for paired samples, and Wilcoxon rank-sum test were used as appropriate. Results We enrolled 14 patients (median age at transplant 17.9 years [IQR 16.5, 20.7 yr]; 86% male and 64% with CM). Of 13 with complete data, 8/13 patients (62%) had at least mild PTSD symptoms and 3/13 (23%) had PDS-5 scores indicating probable PTSD diagnosis. Only one patient carried a formal diagnosis of PTSD. 5/13 (39%) patients had probable depression by PROMIS®. Compared to CM patients, CHD patients had more severe PTSD symptoms (p = 0.035), higher depression scores (p = 0.018) and lower PF and SSR PROMIS® scores (p = 0.017 and 0.003, respectively). Conversely, CM patients had higher resiliency scores (p = 0.021). Conclusion In this pilot study, we found high prevalence of PTSD and depression symptoms with discordant formal psychiatric diagnoses. This suggests that these disorders may be underrecognized in the adolescent and young adult heart transplant population. The routine use of PRO measures should be tested in an expanded prospective study to further evaluate their screening utility for psychiatric co-morbidities among members of this vulnerable population. For adolescents and young adults, receiving a heart transplant is a profoundly challenging experience. This pilot study examined the burden of psychiatric co-morbidities and resiliency factors in post-transplant patients using patient-reported outcomes (PRO). Patients transplanted between ages 15-25 years at one of three tertiary care centers were asked to complete six PRO measures—PROMIS® measures to assess depression, anxiety, satisfaction with social roles (SSR), and physical functioning (PF); Posttraumatic Stress Diagnostic Scale for DSM-5 (PDS-5) for Posttraumatic Stress Disorder (PTSD); and the Connor-Davidson Resilience Scale-10 for resiliency. Formal psychiatric diagnoses and demographics were collected retrospectively from chart review. Comparisons were made between PRO measures and formal diagnoses, with further comparison between those transplanted for congenital heart disease (CHD) and cardiomyopathy (CM). PROMIS® scores were dichotomized at their literature-reported cutoffs for depression and anxiety. Fisher's exact test, McNemar's test for paired samples, and Wilcoxon rank-sum test were used as appropriate. We enrolled 14 patients (median age at transplant 17.9 years [IQR 16.5, 20.7 yr]; 86% male and 64% with CM). Of 13 with complete data, 8/13 patients (62%) had at least mild PTSD symptoms and 3/13 (23%) had PDS-5 scores indicating probable PTSD diagnosis. Only one patient carried a formal diagnosis of PTSD. 5/13 (39%) patients had probable depression by PROMIS®. Compared to CM patients, CHD patients had more severe PTSD symptoms (p = 0.035), higher depression scores (p = 0.018) and lower PF and SSR PROMIS® scores (p = 0.017 and 0.003, respectively). Conversely, CM patients had higher resiliency scores (p = 0.021). In this pilot study, we found high prevalence of PTSD and depression symptoms with discordant formal psychiatric diagnoses. This suggests that these disorders may be underrecognized in the adolescent and young adult heart transplant population. The routine use of PRO measures should be tested in an expanded prospective study to further evaluate their screening utility for psychiatric co-morbidities among members of this vulnerable population.