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Psychological Distress in Parents of Children With Advanced Cancer

Abby R. Rosenberg, MD, MS; Veronica Dussel, MD, MPH; Tammy Kang, MD; J. Russel Geyer, MD; Cynthia A. Gerhardt, PhD; Chris Feudtner, MD, PhD, MPH; Joanne Wolfe, MD, MPH
JAMA Pediatr. 2013;167(6):537-543. doi:10.1001/jamapediatrics.2013.628.
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Importance Parent psychological distress can impact the well-being of childhood cancer patients and other children in the home. Recognizing and alleviating factors of parent distress may improve overall family survivorship experiences following childhood cancer.

Objectives To describe the prevalence and factors of psychological distress (PD) among parents of children with advanced cancer.

Design Cohort study embedded within a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study).

Setting Multicenter study conducted at 3 children's hospitals (Boston Children's Hospital, Children's Hospital of Philadelphia, and Seattle Children's Hospital).

Participants Parents of children with advanced (progressive, recurrent, or refractory) cancer.

Main Outcome Measure Parental PD, as measured by the Kessler-6 Psychological Distress Scale.

Results Eighty-six of 104 parents completed the Survey About Caring for Children With Cancer (83% participation); 81 parents had complete Kessler-6 Psychological Distress Scale data. More than 50% of parents reported high PD and 16% met criteria for serious PD (compared with US prevalence of 2%-3%). Parent perceptions of prognosis, goals of therapy, child symptoms/suffering, and financial hardship were associated with PD. In multivariate analyses, average parent Kessler-6 Psychological Distress Scale scores were higher among parents who believed their child was suffering highly and who reported great economic hardship. Conversely, PD was significantly lower among parents whose prognostic understanding was aligned with concrete goals of care.

Conclusions and Relevance Parenting a child with advanced cancer is strongly associated with high to severe levels of PD. Interventions aimed at aligning prognostic understanding with concrete care goals and easing child suffering and financial hardship may mitigate parental PD.

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Figure 1. Parent Kessler-6 Psychological Distress Scale (K6) scores stratified by the degree to which child's health affects distress. Distribution of parental distress scores as defined by the K6 among the 79 parents with complete K6 data who also answered the question: “During the last 30 days, to what extent has your child's health contributed to these feelings?” with options “a great deal,” “a lot,” “somewhat,” “a little,” or “not at all” (P < .001 based on Kruskal-Wallis test).

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Figure 2. Parent Kessler-6 Psychological Distress Scale (K6) scores associated with perceptions of cure likelihood and corresponding goals of therapy. Distribution of parents' treatment goals according to their understanding of prognosis of their child, with their corresponding mean (SD) K6 scores are presented. *Goals that were concrete and aligned with prognostic understanding. Parents who reported concrete and aligned treatment goals reported lower K6 scores, ie, less distress, than parents who reported other treatment goals. †Two of 33 parents in “likely” or “very likely” group did not report overall goal of medical care. ‡Standard deviation could not be estimated.

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