DISCUSSION
The COVID-19 pandemic changed all aspects of healthcare delivery across the globe including pediatric oncology care.5Psychosocial measures related to the pandemic have been studied in caregivers of pediatric cancer survivors.3, 6 This study additionally found increased distress amongst patients who are actively receiving therapy.
Here, treatment delays were found to be uncommon, and those delayed did not endorse more distress. However, being on therapy was associated with increased distress for both the patient and for their family. This may be related to fear of increased exposure during visits to healthcare facilities. The institutional visitor policy for pediatric patients allowed one visitor for clinic and infusion appointments and hospitalizations, consistent with Center for Disease Control (CDC) recommendations and other institutions across North America.7 During hospitalizations, visitors were limited to patients’ rooms and asked to wear masks. Shared spaces such as playrooms were closed. Some participants expressed stress from having decreased caregiver support and other typical coping mechanisms, especially if there was bad news, though overall, the rationale of the policy was understood. Similar to other centers, exceptions were granted in end-of-life situations for pediatric patients.8
Due to risk of COVID exposure, a member in a third of surveyed households stopped working, and those not working outside the home reported significantly more distress than households with someone working outside the home. Further investigation would be valuable to elucidate the cause of increased distress, which may include lack of income or feelings of isolation.
Some college students surveyed planned to defer classes due to COVID-related changes, such as the challenges of virtual classes or the risk of exposure during in-person learning. Patients who receive cancer therapy are more likely to have learning disabilities,9 which may contribute to difficulties in this novel online environment. In a French survey of parents of children with attention deficit hyperactivity disorder (ADHD), parents expressed concern that inattention was worse with at-home schooling, and decreased accommodations were available during COVID-19.10
While there were many changes to hospital, home, work, and school environments, treatment timelines were largely preserved, which is similar to a Latin American study.2 Although early studies from the Middle East, Northern Africa, and Europe demonstrated delays in therapy due to risk of COVID-19 concerns,1, 11 the severity of COVID-19 infections in children with malignancies now appears to be similar to their healthy peers.12-16The benefit of continuing therapy during the pandemic likely outweighs the possibility of COVID-19 exposure in most cases and is supported by international pediatric oncology groups.15
In regard to delayed appointments, patients/families surveyed in this study reported that virtual visits were helpful substitutes, and participants overall felt positively about their convenience. The use of telemedicine has increased since the pandemic and will likely continue to play a role in pediatric oncology care, even beyond the pandemic.17-20
Other strategies to improve care in this population includes ensuring support during a pandemic, especially when patients or their caregivers are 1) receiving active therapy, 2) exposed to a household member with COVID symptoms/diagnosis, 3) unable to work outside the home, or 4) reaching out for information, which were all associated with increased distress. When these stressors are present, social work, psychology/psychiatry, and child life services should be consulted to provide additional support. As providers, we can also support patients asking for more information by remaining current on COVID-related evidence and providing consistent recommendations.
Limitations of the study include risk for recall bias. Although this survey was not validated, it provided valuable input that can be incorporated into practice to improve the oncology patient and caregiver experience during the COVID-19 pandemic.