Longitudinal changes of psychological distress among childhood cancer survivors: The Swiss Childhood Cancer Survivor Study

Abstract

BackgroundChildhood cancer survivors may experience psychological distress due to the disease, cancer treatments, and potential late effects. Limited knowledge exists regarding longitudinal changes in psychological distress after childhood cancer. We aimed to determine changes in psychological distress over time and explore determinants of changes.MethodsThe Swiss Childhood Cancer Survivor Study collected data at baseline (2007–2009) and follow‐up (2010–2012). Psychological distress was measured using the Brief Symptom Inventory 18 (BSI‐18), including three symptom scales (somatization, depression, anxiety) and an overall distress index (Global Severity Index, GSI). Sum‐scores were T‐standardized (mean = 50; standard deviation [SD] = 10). Survivors with a score ≥57 on the GSI or two symptom scales were classified as cases with distress. We used linear mixed effects regression to identify potential sociodemographic and clinical determinants of change in psychological distress.ResultsWe analyzed 696 survivors at baseline (mean age = 24 years [SD = 4], 49% females, mean time since diagnosis = 16 years [SD = 4]). On follow‐up (2.4 years, SD = 1), 317 survivors were analyzed, including 302 participants with repeated measures. We found that 13% (39/302) were cases at baseline, and 25% (76/302) were cases on follow‐up. Those older at study and longer since diagnosis, females, diagnosed with central nervous system (CNS) tumors, and those reporting late effects were more likely to experience higher levels of distress. Females and unemployed are at higher risk for developing or persisting psychological distress than males and those who are employed or in training.ConclusionWe observed an increase in psychological distress score over time, with higher proportion of psychological distress on follow‐up. Anticipatory guidance and screening should be implemented in regular follow‐up care.