• Abby R Rosenberg, Veronica Dussel, Tammy Kang, J Russel Geyer, Cynthia A Gerhardt, Chris Feudtner, and Joanne Wolfe.
• Division of Pediatric Hematology and Oncology, Seattle Children's Hospital, WA, USA.
• JAMA Pediatr. 2013 Jun 1;167(6):537-43.

ImportanceParent 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.ObjectivesTo describe the prevalence and factors of psychological distress (PD) among parents of children with advanced cancer.DesignCohort study embedded within a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study).SettingMulticenter study conducted at 3 children's hospitals (Boston Children's Hospital, Children's Hospital of Philadelphia, and Seattle Children's Hospital).ParticipantsParents of children with advanced (progressive, recurrent, or refractory) cancer.Main Outcome MeasureParental PD, as measured by the Kessler-6 Psychological Distress Scale.ResultsEighty-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 RelevanceParenting 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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