Distress in parents of children with advanced cancer enrolled in the PediQUEST Study

Abstract

Purpose: Psychological distress (PD) in a parent may have an effect on their children and other members of their family. We sought to describe the prevalence and predictors of PD among parents of children with advanced cancer. Patients and Methods: Parents of children with progressive, recurrent, or refractory cancer who were treated at one of 3 large children¡&hibar;s hospitals and enrolled in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study completed the Survey of Caring for Children with Cancer (SCCC). Parent PD was measured by the Kessler-6 general psychological distress scale. K6 scores of >= 7 suggest high distress and those >= 13 indicate serious psychological distress (SPD, U.S. SPD prevalence is 3%). Linear and logistic regression models were used to evaluate associations between PD and child/ parent factors. Results: 86 of 104 enrolled parents completed SCCC (83% participation); 81 had complete K6 data. Over 50% of parents reported high distress and 16% met criteria for SPD. Parent and child demographic factors were not associated with parent PD in this study; however, parent perceptions of prognosis, goals of therapy, perceived child symptoms/suffering, as well as financial hardship were. In multivariate analyses, parent PD scores were higher among those whose care goals were incongruent with their prognostic understanding, whose child was suffering highly, and who perceived great economic hardship due to their child¡&hibar;s illness. Conclusions: Parenting a child with progressive cancer can profoundly affect mental health. Interventions aimed at aligning care goals with prognostic understanding, easing child suffering and financial hardship may improve parental emotional wellbeing.