Abstract
BACKGROUND: Most childhood cancer survivors (CCS) experience late effects of cancer treatment. Heightened worry about late effects during treatment and early survivorship has been reported by parents. This study sought to describe long-term parental worry and its impact on parent engagement in CCS care, information needs, and perceived child health. PROCEDURE: Parents of CCS were surveyed about patterns of worry, attendance at survivorship-related appointments, information needs, CCS late effects, and perceived CCS health, as part of an ongoing longitudinal survivorship study. The primary variable of interest was heightened worry (moderately/very worried about the child's future health) and was used to compare groups. Log-Binomial regression was used to examine predictors of heightened worry. RESULTS: Among 89 parents of CCS (ages: 15-30 years), 30% expressed heightened worry. Decisional regret, frequent cancer-related thoughts, desire for detailed late effects information, and parent-reported CCS experience of two or higher late effects were associated with increased risk of worry (risk ratio [RR] range: 2.6-3.9). Lower perceived CCS emotional and social health was associated with increased risk of worry (RR: 2.0-2.4). While many parents continued attending survivorship visits with CCS (52%), this was not associated with heightened worry. CONCLUSIONS: One-third of parents of CCS experience persistent heightened worry about their child's health, and many remain highly involved in CCS care years after treatment completion when most CCS have reached adulthood. Future work should prioritize partnering with parents to prepare and empower CCS to assume responsibility over their care, while providing information and psychological support to parents and families during these transitions.