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.