Introduction
A childhood cancer diagnosis is a profoundly disruptive event, impacting not only the life of the child with cancer, but also the lives of their parents. As a result, parents are at risk for low health-related quality of life (HRQOL) [
1]. HRQOL refers to a multifaceted assessment of how well an individual functions and perceives well-being in the context of their physical, mental, and social health [
2].
Parents of children with cancer may experience low HRQOL at different stages following the cancer diagnosis. During active treatment, parents of young children reported lower HRQOL compared to population norms, particularly in the HRQOL-domains vitality, mental health, role limitations due to emotional problems, and general health perception [
1]. Time since diagnosis plays an important role. In a longitudinal study from Australia with parents of seriously ill/injured children, parental quality of life (QOL) was reduced at the time of diagnosis and normalized seven months after diagnosis for both psychosocial and physical QOL [
3]. Similarly, in a Dutch study including parents of children with leukemia, mental QOL gradually improved to values similar to the Dutch reference values from shortly after the diagnosis up to three years after the diagnosis [
4]. However, other studies found lower physical and mental HRQOL in parents of children with cancer compared to normative data, even after three to four years after diagnosis [
5,
6]. A French study of parents of childhood leukemia survivors found that seven years after diagnosis, QOL was lower in the physical health and social relationships domains and higher in the psychological domain compared to a French reference population [
7].
HRQOL of parents of very long-term childhood cancer survivors (CCS) was similar (10 years after diagnosis) [
8] or even slightly higher compared to the general population reference data (21 years after diagnosis) [
9]. However, more parents of CCS reported mental health problems compared to normative data [
8]. It is crucial to investigate whether low HRQOL persists in parents many years after their child’s cancer diagnosis. This will help to determine the continued need for parental support beyond the early stages of their child’s illness.
Previous research revealed differences in HRQOL between mothers and fathers of children with cancer. Mothers reported lower mental [
6] and psychological [
7] HRQOL than fathers. When comparing parents within the same family, mothers had lower levels in various HRQOL domains such as cognitive function, sleep, and vitality. Longitudinal data suggested that this discrepancy between mothers and fathers decreased over time [
10]. In addition to gender, several other factors have been associated with HRQOL in parents of CCS. A high level of education was associated with higher physical [
6] and psychological [
7] QOL. Parents’ QOL improved over time after cancer diagnosis [
5,
7]. Additionally, certain cancer-related characteristics, such as having received craniospinal radiation or having had a relapse, have been identified as risk factors for lower parental HRQOL [
7]. Another study found that lower HRQOL in fathers of children with cancer was predicted by type of diagnosis (retinoblastoma) and higher treatment intensity [
5]. However, an Australian study found no association between age, gender, diagnosis, treatment, number of late effects, or time since diagnosis and parental HRQOL [
8].
Given the limited knowledge about the long-term well-being of parents of CCS, we aimed to (1) describe the HRQOL of parents of very long-term CCS and compare it to parents from the general population in Switzerland, and (2) examine sociodemographic and cancer-related characteristics for lower HRQOL in parents of CCS.
Discussion
On average 24 years after their child’s cancer diagnosis, parents of CCS reported physical and mental HRQOL comparable to that of parents in the general population. Mothers and fathers of CCS showed similar HRQOL compared to their respective comparison mothers and fathers, except for higher HRQOL in the domain of physical functioning in mothers of CCS. Several sociodemographic characteristics were associated with low HRQOL, whereas none of the cancer-related characteristics were associated with HRQOL in parents of CCS.
Regarding our first aim, we found that parents of CCS reported similar levels of physical and mental HRQOL to comparison parents. This finding aligns with a previous study, which showed that the overall HRQOL of CCS parents did not differ from normative data 10 years post-diagnosis [
8]. Similarly, a Dutch study reported comparable or slightly better HRQOL in parents of young adult CCS compared to a reference sample 21 years after diagnosis [
9], however, a French study involving parents of long-term CCS found differing results [
7]; while physical HRQOL was lower compared to a reference population, mental HRQOL was higher 7 years after diagnosis.
Furthermore, we found that HRQOL across all health domains was similar in parents of CCS and parents from the general population. This contrasts with a previous study showing differences in HRQOL in all domains except bodily pain [
8]. Specifically, a higher proportion of parents from the general population reported problems in the domains of mobility, self-care, and usual activities, whereas a higher proportion of CCS parents reported problems in the domain of mental health. Comparing mothers and fathers separately revealed that mothers of CCS had similar HRQOL levels in all domains except physical functioning, where they fared better than comparison mothers. Fathers of CCS did not differ from comparison fathers in any HRQOL domain. A previous study found that mothers of CCS had higher HRQOL in all domains except sleep and cognitive functioning compared to a female reference sample. Additionally, CCS fathers had significantly higher HRQOL in social functioning and aggressive emotions compared to reference males [
9].
Differences in methodological approaches may explain the varying results when comparing HRQOL in our sample of parents to those in previous studies. Our sample of CCS parents differed from the comparison parent sample in several sociodemographic characteristics, which we adjusted for in the analyses. Previous studies used reference samples of adults in general, not specifically parents, and did not compare or account for differing sociodemographic characteristics. Another possibility is that CCS parents in the other studies received different psychological and social support during their child’s cancer journey. Access to support groups, mental health services, and community resources can influence how parents cope with their child’s illness and recovery, thereby impacting HRQOL [
26].
Addressing aim 2, we found that none of the cancer-related characteristics were associated with mental or physical HRQOL in parents of CCS. This finding is consistent with a previous study [
8]. However, other research on cancer-related determinants of HRQOL in parents of long-term CCS does not present a consistent picture. For instance, a French study found that a longer time since diagnosis was associated with higher psychological QOL [
7]. This supports findings from longitudinal studies [
3,
4] suggesting that HRQOL gradually improves with time since diagnosis. However, given the range of time since diagnosis in our study (7–40 years), this factor might be less influential, as even the shortest duration since diagnosis is still relatively long. A Dutch study found that cancer recurrence was a significant predictor of higher HRQOL in the social and emotional domains [
9]. Another study found lower HRQOL was significantly predicted by certain types of diagnosis and higher treatment intensity, but only in fathers [
5]. Since we did not examine the associations with cancer-related characteristics separately for mothers and fathers, a direct comparison with our findings is not possible.
Mothers of CSS in our study exhibited lower mental HRQOL compared to fathers, but physical HRQOL was similar. This finding aligns with previous studies involving parents of CCS, showing that mothers have significantly lower mental [
6] and psychological [
7] HRQOL compared to fathers. In the general population (
N = 1209), men also reported higher mental HRQOL than women in Switzerland [
13], Germany [
27] and in the US [
28]. Thus, lower mental HRQOL observed in mothers of CCS compared to fathers of CCS in our study is not necessarily related to their child’s illness. Lower mental HRQOL in women has been linked to factors such as less social support [
29] and to unfavorable socio-economic characteristics such as lower income [
30]. Further exploration and understanding of the gender-specific causes of women’s lower mental HRQOL, both in mothers of CCS and in the general population, are critical.
Additionally, we found that having a chronic health condition was associated with both lower physical and mental HRQOL. The same association was found in a large sample representative of the Swiss population [
13] and in a review involving adults with chronic conditions [
31]. It is therefore likely that this association is independent of the child’s cancer. The same assumption likely applies to the other determinants of lower HRQOL found in this study. Specifically, being from the French or Italian parts of Switzerland was associated with lower physical and mental HRQOL. Lower education was associated with lower physical HRQOL, while having a migration background was associated with lower mental HRQOL. Similar results were found in the Swiss general population [
13]. These findings suggest that our results in the sample of CCS parents may not be related to childhood cancer.
Being explicitly approached as CCS parents was associated with reporting lower mental HRQOL compared to CCS parents approached as part of the general population. This result could be explained by the fact that being approached as CCS parents may have brought back difficult memories of their experiences and struggles with childhood cancer, potentially triggering emotional distress and affecting their mental well-being.
A strength of this study is its relatively large sample sizes and large proportion of participating fathers, which enhance the reliability and generalizability of the findings. Another notable strength is the comprehensive comparison framework, which includes both comparisons between parents of CCS and the general population, as well as between mothers and fathers separately. This approach offers a thorough examination of HRQOL. There are limitations that need to be considered when interpreting the findings. Firstly, relying on self-reported data to assess HRQOL may have introduced social desirability or recall bias. However, the SF-36v2 is a well-validated and widely used instrument, ensuring robust measurement. Secondly, the assessment of late effects relied solely on parental reporting and was limited to a binary yes/no response for the presence of late effects. For a more comprehensive interpretation of this characteristic and its impact on HRQOL, it would have been beneficial to include information on whether CCS have a recognized disability and require parental care. Thirdly, parents were not explicitly asked to forward the questionnaire to the other parent if they no longer lived in the same household, potentially underrepresenting non-resident parents. Nevertheless, only 9% of the parents in our sample [
32] were separated or divorced, suggesting a minimal impact on the overall findings. Finally, the study was conducted in Switzerland, which may limit the generalizability of the findings to other cultural or geographic contexts, as the sociodemographic characteristics may not be representative of more diverse populations.
In conclusion, this study provides valuable insights into the long-term HRQOL of CCS parents in Switzerland, a population that has been understudied so far. Our findings present a positive picture of parental HRQOL, on average 24 years after their children’s cancer diagnosis, showing that CCS parents have comparable physical and mental HRQOL to parents from the general population. It appears that parents of CCS have recovered from the difficult period during the cancer illness and have adapted well. Differences between subgroups of CCS parents based on sociodemographic characteristics may be explained by factors independent of their child’s cancer. These findings indicate that while supportive care should concentrate on the short-term period following a cancer diagnosis and extend into the subsequent years, the influence of cancer-related factors on HRQOL seems to diminish long after the diagnosis. Therefore, the focus should shift towards supporting parents who are, similar to the general population, at risk for poor HRQOL, such as mothers, parents with migrant background, or parents with educational disadvantages.
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