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.