Gender‐specific differences in parental health‐related quality of life in childhood cancer

Abstract

Background Parents of children with cancer are at risk for impaired health‐related quality of life (HRQoL). Most prior research has focused on the HRQoL of mothers. The aim of this study is to describe HRQoL in mothers and fathers, and determine the influence of sociodemographic, medical, and psychosocial factors. Procedure In a cross‐sectional study, both parents completed questionnaires on sociodemographics, distress, and HRQoL. Parental HRQoL was compared to healthy population values. Differences between mothers and fathers were evaluated with multilevel analysis. Gender‐specific HRQoL determinants were assessed via multiple linear regression analysis. Results Parents (202 mothers, 150 fathers; comprising 121 couples) of 231 children with different cancer diagnoses (mean time since diagnosis 3.3 ± 1.4 years, 90% posttreatment) participated. Compared to healthy women and men, mothers and fathers reported significantly impaired HRQoL on the following domains: cognitive functioning, sleep, daily activities, and vitality (Cohen's d = 0.3‐0.9). Additionally, maternal HRQoL was reduced on the domains gross motor functioning, pain, social functioning, sexuality, and depressive emotions. Mothers scored worse than fathers on six of 12 domains. Risk factors for adverse outcomes in both parents were higher distress, emotional and parenting problems, little social support, medication use, and active treatment of the child. Other determinants in mothers were non‐Dutch background and unemployment, while lower HRQoL in fathers was predicted by their child's diagnosis type, shorter time since diagnosis, and treatment intensity. Conclusion These outcomes illustrate the need for family‐centered care. Future interventions aimed at improving parental functioning should take into account gender‐specific differences in HRQoL to reach optimal efficacy.

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

“…Furthermore, we did not have information on which parent was the primary caregiver; perhaps we would have found that this parent's rating was consequently higher or lower than the second parent's rating. However, we do not really expect this, since the mother is still the primary caregiver in the majority of the Dutch families [14]. Finally, it would have been interesting to include child self-reports as well, and to take these into account in the comparison of parental proxy ratings.…”

“…Data of this study are derived from the "Amsterdam Parent Project", a cross-sectional multicenter study on parental sleep, QoL and psychosocial functioning in childhood cancer. A detailed description of the Amsterdam Parent Project is given elsewhere [14]. For the purposes of the current study, the questionnaires on parent-rated child HRQoL as well as those on parental QoL and distress were included.…”

“…It is not known, however, to what extent these factors play a role in disagreement in parent proxy ratings between mothers and fathers of (chronically) ill children. Since previous research in parents of children with cancer has shown that, within one family, mothers' self-reported QoL is lower than fathers', we hypothesize that mothers report lower HRQoL for their child as well [14]. Moreover, medical factors such as the child's treatment status, time since diagnosis and type of diagnosis might be of influence on proxy ratings, since these factors entail different stressors [19].…”

“…However, this is only one study. Furthermore, results in parents of healthy children may not be directly applicable to ill children, since circumstances are different and parents of ill children face additional distressing challenges [13,14].…”

Parental functioning during maintenance treatment for childhood acute lymphoblastic leukemia: Effects of treatment intensity and dexamethasone pulses

“…In general, it is known that parents of pediatric cancer patients are at risk for impaired QoL, both during and after treatment, and that major determinants of adverse QoL outcomes are sleep problems and distress 12–17 . Specifically during ALL maintenance treatment, reports on parental psychosocial functioning are sparse, but they show high prevalence of sleep disturbances and significant emotional distress 18–23 …”