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 three children’s hospitals (Boston Children’s Hospital, Children’s Hospital of Philadelphia, Seattle Children’s Hospital).
Participants
Parents of children with advanced (progressive, recurrent, or refractory) cancer
Outcome Measure
Parental PD, as measured by the Kessler-6 (K6) general psychological distress scale.
Results
86 of 104 parents completed the Survey about Caring for Children with Cancer (SCCC, 83% participation); 81 parents had complete K6 data. Over 50% of parents reported high PD and 16% met criteria for serious PD (compared to 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 K6 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
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.