Health-related quality of life in parents of long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study - Parents
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Purpose
Having a child with cancer can profoundly impact parents’ health-related quality of life (HRQOL). However, there is a lack of knowledge about the long-term effects of childhood cancer on parents’ well-being. The current study aimed to 1) describe the HRQOL of parents of long-term childhood cancer survivors (CCS) and compare it with that of parents from the general population in Switzerland, and 2) investigate sociodemographic and cancer-related determinants of lower HRQOL in parents of CCS.
Methods
In this cross-sectional study, a total of 751 parents of CCS (mean time since diagnosis = 23.7 years, SD = 6.7 years) and 454 parents from the general population reported their HRQOL by completing the Short Form-36 (SF-36v2). Sociodemographic and cancer-related characteristics were also collected.
Results
Multilevel regression analyses showed that parents of CCS and parents from the general population had similar physical and mental HRQOL. When comparing mothers and fathers separately, there were no differences between the samples, except for higher HRQOL in the domain of physical functioning in mothers of CCS. Cancer-related characteristics were not associated with HRQOL in parents of CCS. Several sociodemographic characteristics such as being female, being from the French or Italian-speaking part of Switzerland, having a lower education, having a chronic condition, and having a migration background were associated with lower HRQOL.
Conclusion
Parents of CCS are doing well a long time after their child’s cancer diagnosis. Nevertheless, tailored support should be provided for at-risk demographic groups.
Plain English summary
Having a child with cancer might have a profound impact on various aspects of parents’ well-being, including their quality of life. However, not much is known about how parents are doing very long after their child’s cancer diagnosis. Our study aimed to describe the quality of life of parents of childhood cancer survivors and compare it to that of parents from the general population. Furthermore, we sought to compare mothers and fathers separately. We conducted a questionnaire survey with 751 parents of childhood cancer survivors, on average 24 years after the diagnosis. Additionally, 454 parents from the general population completed a similar questionnaire. We found that parents of survivors reported a similar quality of life to parents from the general population. When comparing mothers and fathers separately, we found no differences between the samples, except for higher quality of life in the domain of physical functioning among mothers of survivors compared to mothers of the general population. We conclude that overall, parents of childhood cancer survivors are doing well long after their child’s cancer diagnosis.
