Persistently low peace of mind in parents of cancer patients: A five-year follow-up study

Background: Pediatric cancer affects the well-being of the entire family. Previously, our group found that 76% of parents experience low peace of mind after diagnosis. Herein, we present a five-year follow-up study of these same parents, aiming to determine whether low peace of mind persisted, and what baseline variables associate with persistently low peace of mind. Procedure: Cross-sectional survey of parents of children with cancer between April 2004 and September 2005 within one year of diagnosis, and a follow-up questionnaire administered at least five years later. Results: Sixty-six percent of parents whose children were living and who were able to be contacted completed follow-up questionnaires (91/138). Of these parents, 77% (70/91) were parents of disease-free survivors and 23% (21/91) had recurrent disease. The majority of parents (66%, 53/88) had low peace of mind five years after diagnosis, regardless of relapse status or prognosis. Additionally, 28% of parents of disease-free survivors reported being very/extremely worried about relapse (18/66), late toxicities (19/66), and late effects (19/66). Each worry was associated with low peace of mind (OR between 9.66 and 20.09 for each worry). In bivariable logistic regression, low peace of mind at five years was negatively associated with trusting the physician completely at baseline, with and without adjustment for relapse status (OR, 0.32; 95% CI, 0.12 to 0.87, P = 0.032, adjusted for relapse). Conclusion: Most long-term studies and interventions have focused on parental bereavement. Our findings show that most parents are changed by pediatric cancer, even when children survive and the future is bright.