To our knowledge, the present study was among the first studies to assess the anxiety level and HRQoL of pediatric Hematology/Oncology patients along with anxiety impact on HRQoL during the initial period of the COVID-19 crisis. It included a large number of patients with chronic hematological/oncological diseases, representing a vulnerable population hardly impacted by the restrictions imposed during the pandemic.
There was an increase in anxiety levels in pediatric Hematology/Oncology patients, and levels were significantly higher in patients receiving chemotherapy than transfusion-dependent patients. HRQoL, with its three dimensions, was significantly associated with anxiety levels; thus, the null hypothesis of the study was rejected.
In the present study, the lack of information about the COVID-19 pandemic was significantly associated with increased anxiety levels. Children facing unexpected and unknown events tend to make sense of the situation on their own; they may start having their own beliefs about the virus and blaming themselves for the changes happening around them, which makes them more liable to stress and anxiety. (27) The importance of believes about the current situation was investigated among university students in Jordan, where they found that students had a false belief about the virus being a result of a global conspiracy, triggering a high level of anxiety. Those beliefs were found to be caused by a lack of accurate information. (28) The lack of knowledge effect is not different between young children than older youth; they both need age-appropriate, honest, and reliable information about this pandemic in order to control their anxiety. Information can be provided to them by healthcare professionals, especially mental health services, families, and other significant adults like teachers. Preparing the child in a time of crisis helps decrease the harmful psychological effect of an occurring disaster. (29)
The emerging pandemic placed a burden on health systems, and an evident shortage could be noticed. It was not possible to maintain all services as usual. (30) The current situation imposed a reallocation of resources and staff shortage. Children and their families worried about not getting the appropriate medical care. (31) This was reflected in our results as anxiety increased with the decrease in the clinics' days.
In the present study, the three dimensions and the total in HRQoL of pediatric Hematology/Oncology patients with decreased. This group of children experiences stress related to their frequent hospital visits, is usually vulnerable to poor social adjustment, usually has problems with peer relations, resulting in poor social skills. (10–13) COVID-19 crisis resulted in changes in daily routine; instead of going to school, children spend more time in front of screens, sleep less, and are less physically active, which affected their physical functioning. (32) Interestingly, the emotional functioning score was better than the physical and social aspects. This could be explained by the change in the daily routine for the children, being at home with their families for a longer time, not being forced to go to school, avoiding any possibility of bullying or other stressors, and even not going to the hospital frequently, so avoiding getting exposed to stress generated by medical procedures. Another point to be considered is that in our study, the patients' age ranged between 2.5 and 13 years; younger children may not understand the extent of the problem caused by this virus or its implications on life nor the implications for the future, whereas, older children and youth may be all too aware of the damage. (33, 34)
Males had significantly lower physical and emotional functioning than females. This may be because males were over-represented in the bleeding/coagulation disorders category, mainly patients with hemophilia A who require regular plasma or factor replacement therapy; they usually suffer from complications of their disease with an accentuated decrease in their physical functioning. Additionally, the decrease in their emotional functioning can be explained by the cultural difference in gender roles, as in Arabic culture, males - even children - are expected not to express emotions during stressful times and are expected to take more responsibility, which can eventually lead to psychological distress. This was conforming with a study conducted by Hegazy et al (35) who found that males experience more pain than females and a study by Liang et al (29) who found that men scored higher than women on the negative coping scales. On the other hand, a study done in Egypt found lower quality of life in female gender among children with cancer. (36) The comparison between the findings of the current study and previous ones is complicated as older studies were not done in a time of pandemic or a crisis.
Awareness of the COVID-19 pandemic was significantly associated with higher levels of social functioning. It was apparent that providing children with an accurate explanation helped that to keep their social connections without exaggerated fears of getting the virus without feeling worried or guilty. Educating children about the current pandemic can have a beneficial effect on their psychological wellbeing, especially that there is no clarity about how long the current situation will last. (37)
Social functioning was negatively associated with the presence of financial problems among patients' families. The distress generated by the financial problems influenced parents-children relationships. Stressed parents find it very difficult to support their children or interact with them properly. (38) There are strong indicators that with the restrictions of movement during the lockdown, there was an increase in the level of domestic violence, child maltreatment, and neglect. During this outbreak, children have also lost social support outside their homes; they lost contact with their peers and other significant protective adults like teachers who may detect signs of abuse or stress. (39–41)
Since the start of the pandemic, there was reduced access to health services, fewer clinic days, reduced inpatient services, shortage of medications and investigations. This disruption had a significant impact on the patients' quality of life. Hospital admissions' difficulties were associated with a significant decrease in the levels of physical and social functioning. (42) While fewer clinic days were associated with a decrease in social and emotional functioning sub-scales of HRQoL. Medication shortage was significantly associated with a decrease in the emotional functioning sub-scale. Many patients with cancer were concerned that this shortage in health services will result in not receiving the appropriate help that their medical needs will be marginalized and that health services are prioritizing the COVID 19 patients over other disorders. (43)
The anxiety about a poorly known, unexpected pandemic like COVID-19 resulted in a poor quality of life. This can be seen with the significant association between anxiety levels and all HRQoL sub-scales. This association emphasizes the importance of discussing the anxiety generated by the long duration of social isolation imposed on children with preexisting physical illness. Lack of social contact, stressors among the family, and the physical burden of the preexisting hematological disorder all had an adverse psychological impact on children. (44)
The present study had several points of strength; it was conducted during the peak of the pandemic in Egypt at a time where there were major social restrictions and lockdown, and while little was known about the pandemic impact on the stress levels of people as well as health authorities. Moreover, it included an adequate number of patients from different chronic hematological/oncological diseases, of which health care services have been significantly affected due to the pandemic.
On the other hand, the study had some limitations. First, its cross-sectional design could not lead to confirmation of any association, in addition to convenience sampling, which may reduce representativeness, although it is the most commonly used sampling method in clinical research. (45) Second, it did not include a control group of healthy children. Moreover, the heterogeneity of the included patients made a comparison with historical control difficult. Finally, no parental anxiety assessment was done as the main concern was to focus on the children's condition and to avoid questionnaires that would be too long and tedious; it might have been of value to correlate between children's and parents' anxiety and should be considered in further studies.