The Impact of Parent Distress on Symptoms and Quality of Life Experienced By Children Undergoing Hematopoietic Stem Cell Transplantation or Chimeric Antigen Receptor T-Cell Therapy: An Argument for Increased Parent Support

Background Hematopoietic stem cell transplantation (HSCT) and chimeric antigen receptor (CAR) T-cell therapy are potentially curative for children with life-threatening conditions but can result in a high symptom burden and poor quality of life (QoL). Parents can experience distress during their childu0027s HSCT but the impact of parent psychological health on symptoms and QoL experienced by children is largely unknown. The purpose of this study is to describe, over time, the association of parent distress with symptom burden and QoL among children undergoing HSCT or CAR T-cell therapy. Methods This multisite study employed a longitudinal, repeated measures design. English and Spanish-speaking children ages 2-18 years with planned HSCT or CAR T-cell therapy were eligible. Parents completed self-report measures (Table 1) at 4 timepoints: pre-cell infusion, and day+30, +60, +90 post. The Memorial Symptom Assessment Scale, and PedsQL Cancer Module were administered to children (parent-proxy for younger children) at corresponding timepoints. A symptom cluster called parent distress was created with 5 parent outcomes (anxiety, depression, stress, sleep disturbance, and fatigue). A 1-factor representation of the data was then created using exploratory factor analysis. Longitudinal parallel processing was used to study the relationship between parent distress and child symptoms and QoL over time. Results 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 distress (Table 1) was consistently higher than normative means generated from non-clinical samples of adults. Figure 1 represents the significant relationship between parent distress and child QoL at baseline and through day +90. There was no significant association between parent distress and child symptoms at baseline or over time (Figure 2). Conclusion Findings suggest that parents experience clinically relevant psychological distress throughout their childu0027s HSCT or CAR T cell therapy and this parent distress is associated with child QoL, but not child symptom scores. Increased psychoeducational support tailored to address parental psychological distress is greatly needed and has potential to positively impact the childu0027s QoL.