Discussion
Because of regular monitoring of psychosocial functioning of children
with cancer in outpatient care and their caregivers, we were able to
compare HRQoL and fatigue of children and distress of their caregivers
during the COVID-19 era to the months directly preceding in large
samples. Surprisingly, the only observed difference was a decrease in
the proportion of distressed caregivers. Previous studies specifically
asking for COVID-19-related stress found that youth with cancer were
worried of getting ill and having severe
complications13 and that adolescents and young adults
with cancer were at high risk for psychological distress during the
COVID-19 era.14 Our population may have been less
worried about COVID-19, since healthcare professionals shared reassuring
information from pediatric oncology centers in other countries with them
early on, suggesting that children with cancer seemed relatively
unaffected by COVID-19.
In line with our results, recently published longitudinal studies in
clinical adult populations also found signs of resilience of
psychosocial function during the COVID-19 era.15-17 In
women with breast cancer, small but significant improvements were found
in quality of life, physical functioning and role functioning during the
COVID-19 era compared to before.15 Furthermore, no
differences were found on most domains of HRQoL and depressive symptoms
during the COVID-19 era compared to before in Italian and Serbian
multiple sclerosis patients.16, 17 One study argued
that the resilience of their clinical population may be explained by
being accustomed to experiencing (medical traumatic)
stress,16 which can change perspectives and tolerance.
Similarly, because of their experience with medical traumatic stress,
children with cancer and their parents may have appropriate adaptive
styles or strategies to cope with stress caused by
COVID-19.18, 19 We recommend future studies to compare
the pre-post COVID-19 results of clinical populations to the general
population to study possible differences in coping.
Furthermore, the care that children with cancer and their caregivers
received may have helped maintaining psychosocial functioning.
Outpatient care at our center was almost completely continued (partly
digitally) during the crisis and physicians and specialized healthcare
professionals of the comprehensive psycho-oncology department were
readily available, as per usual. The availability of these healthcare
professionals may have caused a continuous feeling of support. Also,
some caregivers mentioned that changes in Dutch daily life due to
COVID-19 such as home schooling, increased societal awareness of
hygiene, working from home and less traveling for medical appointments
decreased feelings of being different from others and reduced the
challenge of managing appointments in daily family life.
We did not find different effects of COVID-19 stress on psychosocial
functioning between families with a child during or after treatment for
cancer. It should be noted however that we exclusively included families
of children with cancer receiving outpatient care in The Netherlands.
The COVID-19 pandemic may have had different impact on the psychosocial
functioning of families with hospitalized children, due to visiting and
leisure restrictions and increased health concerns, or in other
countries. Also, on the longer term, COVID-19 consequences such as
financial problems or loss of employment may increase the risk of
psychosocial problems in all families in pediatric
oncology,20 and should be taken into account in future
research and care.
In conclusion, we found that the HRQoL and fatigue of children with
cancer in outpatient care was not different during the early months of
the COVID-19 pandemic, and their caregivers were less often distressed
than before. Results may be explained by experience with medical
traumatic stress, appropriate support from healthcare professionals and
stress-reducing changes in their daily life.