Abstract

BackgroundThe impact febrile neutropenia (FN) has on the health-related quality of life (HRQoL) of children with cancer and their families is poorly understood. We sought to characterize the course of child and parent HRQoL during and following FN episodes.MethodData on HRQoL were collected in the multisite Australian Predicting Infectious ComplicatioNs in Children with Cancer (PICNICC) study. Participants were enrolled between November 2016 to January 2018. The Child Health Utility (CHU9D) was used to assess HRQoL in children (N = 167 FN events) and the Assessment of Quality of Life (AQoL-8D) was used to assess HRQoL parents (N = 218 FN events) at three time points: 0–3 days, 7-days and 30-days following the onset of FN. Group-based trajectory modeling (GBTM) was used to characterize the course of HRQoL.FindingsFor children, three distinct groups were identified: persistently low HRQoL over the 30-day course of follow-up (chronic: N = 78/167; 47%), increasing HRQoL after the onset of FN to 30 days follow-up (recovering: N = 36/167; 22%), and persistently high HRQoL at all three timepoints (resilient: N = 53/167; 32%). Applying these definitions, parents were classified into two distinct groups: chronic (N = 107/218, 49%) and resilient (N = 111/218, 51%). The child being male, having solid cancer, the presence of financial stress, and relationship difficulties between the parent and child were significant predictors of chronic group membership for both parents and children. Children classified as high-risk FN were significantly more likely to belong to the recovery group. Being female, having blood cancers and the absence of financial or relationship difficulties were predictive of both parents and children being in the resilient group.InterpretationApproximately half the children and parents had chronically low HRQoL scores, which did not improve following resolution of the FN episode. The child's sex, cancer type, and presence of financial and relationship stress were predictive of chronic group membership for both parents and children. These families may benefit from increased financial and psychosocial support during anti-cancer treatment.FundingNational Health and Medical Research Council Grant (APP1104527).

Highlights

  • In children with cancer, febrile neutropenia (FN) is a common and disruptive complication of anti-cancer treatment, occurring at a rate of 0.75 episodes per 30 days of neutropenia and 0.15 per month of chemotherapy exposure [1,2]

  • We show that the onset of FN has a significant and heterogeneous impact on the health-related quality of life (HRQoL) of children with cancer and their parents, being classified into three groups: chronic; recovery (HRQoL was initially low at FN-onset but recovered during follow-up); and resilient trajectory groups

  • Of the 462 children enrolled in the Australian Predicting Infectious ComplicatioNs in Children with Cancer (PICNICC) study, 117 (25%) children had completed the Children’s Health Utility Index 9 Dimension (CHU9D) survey at least once, for at least one FN episode and 133 (29%) of children had at least one parent that had completed the Assessment of Quality of Life 8 Dimensions (AQoL-8D) survey at least once, for at least one of the child’s FN episodes (Table 1)

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Summary

Introduction

Febrile neutropenia (FN) is a common and disruptive complication of anti-cancer treatment, occurring at a rate of 0.75 episodes per 30 days of neutropenia and 0.15 per month of chemotherapy exposure [1,2]. Findings: For children, three distinct groups were identified: persistently low HRQoL over the 30-day course of follow-up (chronic: N = 78/167; 47%), increasing HRQoL after the onset of FN to 30 days follow-up (recovering: N = 36/167; 22%), and persistently high HRQoL at all three timepoints (resilient: N = 53/167; 32%). Applying these definitions, parents were classified into two distinct groups: chronic (N = 107/218, 49%) and resilient (N = 111/218, 51%). Children classified as high-risk FN were significantly more likely to belong

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