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.