Discussion
We found no difference in HRQoL in children with cancer throughout the COVID-19 pandemic. This may seem surprising because of reports of decreased psychosocial function in general populations and expected vulnerabilities of children with cancer and their caregivers.1,2,12,13 However, other studies also found that psychosocial function of children with chronic illness and cystic fibrosis were less affected by COVID-19 than general population peers during the pandemic.14,15 The lower negative impact of COVID-19 on clinical pediatric populations may be explained by being accustomed to stress15 and isolation16 because of their treatment and decreased feelings of being different because of generalized hygiene measures and home schooling.6 In addition, because of contact with health care professionals at our center children with cancer may have been informed better regarding COVID-19 risks and prevention, and had access to psychosocial support if necessary.17 Also, the disruption of care during COVID-19 may be worrisome,18,19 but outpatient care was continued completely at our center.
Although effect sizes were modest, we found that fatigue decreased and sleep improved during the pandemic in children who had completed active treatment for cancer. In adults with insomnia, improvements in sleep have also been observed during COVID-19, but worse sleep has been found in adults without pre-existing problems.20 Since sleep problems are common in children with cancer,21-23 our results may align with these. Furthermore, our results may be explained by children being homeschooled in some phases, thereby not having to get up early. This may fit better with their sleep schedule, especially that of adolescents,24 and have improved sleep and reduced fatigue.25 In line with this, an Italian study suggested that the sleep changes of adolescents during COVID-19 did not disturb their sleep since the changes were compliant with their physiological sleep needs.26 Finally, clinical observations indicated that children benefitted from being exposed to less stimuli during COVID-19 which may have reduced fatigue and improved sleep.
Notably, compared to published general population norms of the PedsQL generic in Dutch children in several age groups, children with cancer had worse HRQoL and experienced more fatigue.27-30This difference was around 10 points on all domains. Thus, although the COVID-19 pandemic did not negatively impact HRQoL and fatigue of these children, HRQoL should continue to receive appropriate attention in pediatric oncology care.3
As in our previous report,6 we found that stress of caregivers was decreased during the first lockdown. Throughout the duration of the pandemic, stress gradually increased to pre-COVID-19 levels. In addition to having developed adaptive strategies to cope pre-existing stress, we previously explained this result through alleviating daily life changes and increased understanding from others during the COVID-19 pandemic.6 Item scores from the DT-P suggested that problems with transportation and lack of understanding from the environment seemed to be experienced less often during all phases of the pandemic than before (results not shown). Thus, the increase of distress may be attributed to more general stressors, such as sleep problems20,32 and homeschooling while working from home33 due to the sustained crisis.
In conclusion, in this population-based study of children with cancer in outpatient care we found stable levels of HRQoL and small reductions in fatigue throughout the COVID-19 pandemic. An initial decrease in caregiver distress increased to pre-COVID-19 levels, suggesting that the length and consequences of the pandemic may be weighing on them.