Parent Psychological Distress Is Associated with Symptoms and Quality of Life for Children and Adolescents Undergoing Hematopoietic Stem Cell Transplantation: An Argument for Early Integration of Palliative Care (S768)

Journal of Pain and Symptom Management(2020)

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Abstract
•Describe the symptom and quality of life trajectory of children and adolescents undergoing stem cell transplantation and chimeric antigen receptor T cell therapy.•Describe the association between parent psychological distress with symptoms and quality of life experienced by children undergoing stem cell transplant.•Describe a model for collaboration between the primary stem cell transplantation team and pediatric palliative care providers. Hematopoietic stem cell transplantation (HSCT) is potentially curative for children with life-threatening conditions but can result in a high symptom burden and poor quality of life (QoL). Parents provide extensive care for their children and can experience psychological distress. To describe the association of parent anxiety, depression, and stress with the symptom burden and 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/CAR therapy were eligible. Beck Anxiety and Depression Inventories and the Perceived Stress Scale were administered to parents pre-HSCT/CAR, and day+30, +60, +90 post-HSCT/CAR. The Memorial Symptom Assessment Scale (MSAS) and Pediatric Quality of Life Cancer Module were administered to children (parent-proxy for younger children) at corresponding timepoints. Descriptive statistics and correlation analyses were used. To date, 125 child/parent dyads (250 participants) were enrolled across 4 sites. Child mean age was 8.4 years (SD=5.0), 54.4% were male, primarily with an underlying diagnoses of cancer (66.1%). Most parents were mothers (72.8%), mean age of 39.1 years (SD=8.1). Parent anxiety (mean=10.4/SD=9.9), depression (mean=10.4/SD=9.9), and stress (mean=14.0/SD=9.1) scores and child symptom scores (mean=21.8/SD=15.1) were highest pre-HSCT/CAR. Child QoL scores were lowest pre-HSCT/CAR (mean=70.4/SD=13.8). Parent anxiety and depression scores negatively correlated with child QoL pre- and post-HSCT (r=-0.21 to -0.40, p
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Key words
parent psychological distress,palliative care,cell transplantation
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