Aims: Quality of life (QoL) of long-term survivors of childhood cancer and their parents is rarely investigated. This study aimed to describe the QoL of childhood cancer survivors (<16) and their parents compared to population norms.
Methods: We surveyed Australian and New Zealand parents of a survivor of childhood cancer (<16 years) who were >5 years from diagnosis. We measured parents’ QoL using the EQ-5D-5L index score, which evaluates mobility, self-care, participation in 'usual activities, pain/discomfort, and anxiety/depression. Parents completed a proxy measure of their child’s QoL, using the KIDSCREEN10 which assesses loneliness, activity levels, and school performance. We compared parents self-report QoL and proxy reported child QoL to population norms.
Results: In total, 182 survivors’ parents participated (14.4% were fathers). Parents reported on their child who was on average 12.4 years old and 8.4 years since treatment completion. Survivors’ parents overall QoL was no different to population norms (mean(SD); 0.90(0.13) and 0.91(0.14) respectively, p>.05). Anxiety and depression problems were almost twice as common among survivors’ parents when compared to population norms (43.4% and 24.7% p<.0001). Survivors’ parents reported worse overall QoL for their child than population norms (48.0(10.8) and 50.56(9.9), p=.001).
Higher parent QoL was significantly associated with higher overall self-rated health (p<0.001), and lower perceived risk of their child developing a subsequent cancer (p=0.006). Higher survivor QoL was significantly associated with higher parent QoL (p=0.002). Lower survivor QoL was associated with a brain cancer diagnosis (p=0.021). No other parent (e.g. sex, ethnicity) or child factors (e.g. treatment, time since diagnosis) were significant.
Conclusions: Although overall parent QoL was no different to population norms, a significant proportion of parents continue to report problems with their emotional functioning long after their child’s treatment is completed.