Caregiver‐reported outcomes of pediatric transplantation: Changes and predictors at 6 months post‐transplant

• Published in: Pediatric transplantation Vol. 25; no. 7; pp. e14067 - n/a
• Main Authors: Cushman, Grace, Gutierrez‐Colina, Ana M., Lee, Jennifer L., Rich, Kristin Loiselle, Mee, Laura L., Rea, Kelly, Blount, Ronald L., Eaton, Cyd K.
• Format: Journal Article
• Language: English
• Published: Denmark Wiley Subscription Services, Inc 01.11.2021
• Subjects: Caregivers; Caregivers - psychology; Caregiver‐reported outcomes; Child; Children; Children & youth; Female; Heart transplantation; Humans; Kidney transplantation; Liver transplantation; Male; Pediatrics; psychological stress; Quality of life; Quality of Life - psychology; Regression analysis; Stress, Psychological - psychology; Transplant Recipients - statistics & numerical data; transplantation; Transplants & implants; quality of life; Caregiver-reported outcomes; psychological stress; transplantation
• ISSN: 1397-3142; 1399-3046
• DOI: 10.1111/petr.14067

Background It is widely assumed that pediatric solid organ transplantation results in better caregiver‐reported outcomes, including reduced caregiver psychological distress and increased child health‐related quality of life (HRQOL), yet little empirical evidence of this expectation exists. The current investigation aims to fill this gap and identify key clinical course factors predictive of caregiver‐reported outcomes. Methods Forty‐nine caregivers of children (Mage = 10.30 years, SD = 5.43) presenting for kidney, liver, or heart transplant evaluation reported on their psychological distress levels (anxiety, depression, somatization, and global psychological stress) and their children's HRQOL at children's pretransplant evaluations and 6 months post‐transplant. Clinical course factors were ed via medical chart review. Results Caregivers did not report significant changes in their psychological distress from pre‐ to post‐transplant but reported significantly improved child HRQOL across most domains (ds = −.45 to −.54). Higher post‐transplant caregiver global psychological distress was predicted by older child age, shorter time since diagnosis, and lower pretransplant caregiver‐reported child HRQOL even after controlling for pretransplant caregiver psychological distress. Lower post‐transplant child total HRQOL was predicted by more post‐transplant hospitalizations even after controlling for pretransplant child total HRQOL. Conclusions These preliminary results indicate pediatric solid organ transplantation was associated with some improved caregiver‐reported outcomes, specifically children's HRQOL, but not caregivers’ psychological distress. Linear regression models identify several clinical course and pretransplant factors associated with transplantation outcomes. Characterizing how caregivers view their psychological distress levels and children's HRQOL across the transplantation process could inform family‐centered holistic care and support caregiver adaptation to transplantation.