Parent Psychological Distress Is Associated with Symptom Burden and Health-Related Quality of Life in Children and Adolescents Undergoing Stem Cell Transplantation or Chimeric Antigen Receptor T Cell Therapy

Abstract

Hematopoietic stem cell transplantation (HSCT) and chimeric antigen receptor T cell therapy (CAR-T) are potentially curative treatment options for children with life-threatening conditions but can result in a high symptom burden, poor health-related quality of life (HRQoL), and parent psychological distress. In this study we investigated the associations over time between parent psychological distress and symptom burden and HRQoL in children undergoing HSCT or CAR-T. This multisite study used a longitudinal, repeated-measures design. English- and Spanish-speaking parents and their children age 2 to 18 years with planned HSCT or CAR-T therapy were eligible. Parents completed self-report measures of psychological distress (Beck Anxiety and Depression Inventories and Perceived Stress Scale) at 4 time points: before cell infusion and days +30, +60, and +90 after cell infusion. The Memorial Symptom Assessment Scale and PedsQL Cancer Module were administered to children (parent proxy for younger children) at corresponding time points. A symptom cluster called parent distress was created from each parent outcome using exploratory factor analysis. Longitudinal parallel process modeling was used to study the relationship between parent distress and child symptoms and HRQoL over time. A total of 140 child-parent dyads (280 participants) were enrolled across 4 sites. The mean age of the children was 8.4 ± 5 years, 56.4% were male, and most had an underlying diagnosis of malignancy (72.9%). The parents had a mean age of 39 ± 8.1 years, and the majority were mothers (80.7%),. Parent distress was consistently higher than normative means generated from nonclinical samples of adults. A high frequency of suicidal ideation was reported by parents (38.5% at baseline, 37% at day +30, 27.4% at day +60, and 33.6% at day +90). A significant relationship between parent distress and child HRQoL and symptoms was observed at baseline and through day +90. Our findings suggest that parents experience clinically relevant psychological distress throughout their child's HSCT or CAR-T therapy, and that this parent distress is associated with child HRQoL and symptom scores. Increased psychoeducational support tailored to address parental psychological distress is needed and has the potential to positively impact the child's HRQoL and symptoms.