Quality of Life of Children and Adolescents Undergoing Hematopoietic Stem Cell Transplantation Is Negatively Affected by Psychological Distress Experienced by Their Parents: A Case for Pediatric Palliative Care (RP410)

Abstract

•State the elements and trajectory of distress for parents caring for children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) or chimeric antigen receptor (CAR) T-cell therapy.•Examine the impact of parent distress on symptoms and quality of life (QoL) experienced by children and adolescents undergoing HSCT or CAR T-cell therapy. Hematopoietic stem cell transplantation (HSCT) is curative for children with life-threatening conditions but can result in compromised quality of life (QoL). Parents provide extensive care for their children and can experience distress, yet the association between parent and child outcomes has not been sufficiently investigated. To examine the impact of parent distress on QoL among children undergoing HSCT or chimeric-antigen receptor (CAR) T cell therapy. This multisite study employed a longitudinal, repeated measures design. English or Spanish-speaking children ages 2-18 years, with any diagnosis, and planned HSCT or CAR therapy were eligible. Beck Anxiety and Depression Inventories, the Perceived Stress Scale and the PROMIS Sleep and Fatigue Short Forms were administered to parents pre-HSCT/CAR, and day+30, +60, +90 post-HSCT/CAR. The PedsQL Cancer Module was administered to children (parent-proxy for younger children) at corresponding timepoints. Descriptive statistics and longitudinal parallel process (type of effect modeling) analyses were used to explore relationships between parent distress (a single factor consisting of sleep, fatigue, anxiety, depression and stress) and child outcomes. To date, 139 child/parent dyads (278 participants) were enrolled across 4 sites. Child mean age was 8.3 years (SD=4.9), 57% were male, primarily with an underlying diagnosis of malignancy (68.9%). Most parents were mothers (79.1%), mean age of 38.9 years (SD=8.1). Parent anxiety, depression and stress scores were higher than normative means generated from non-psychiatric samples. A significant inverse relationship between parent distress and child QoL was found at baseline and over time post-HSCT. When parent distress was higher at baseline, child QoL was lower. When parent distress increased over time, child QoL decreased. Findings suggest that parents experience heightened distress during the acute phase of their child's HSCT or CAR therapy, and this may impact their child's QoL.