The impact of the COVID-19 pandemic on the quality of life of children
with cancer and their families in Australia
Abstract
Background: It is widely recognised that COVID ‘stay at home’
and wider ‘lockdown orders’ negatively impacted quality of life (QoL).
Children with cancer and their families may have represented a
particularly vulnerable group due to their complex medical treatment.
Here we examined stability and change in child and primary carer QoL
between 2020 and 2021 in Australia. Methods: Parents of
children aged 0-18 years who were undergoing hospital-based cancer
treatment during the pandemic completed an online survey at two time
points, an average of 7.14 months apart, (between October 2020 and July
2021). Child QoL was assessed by parent report using the CHU9D and
PedsQL (Cancer Module). Parent QoL was assessed using the EQ-5D-5L.
Results: Seventy-five parents completed both survey time
points. Child QoL was lower than population norms at both time points
with no improvement from 2020 to 2021. However, parent QoL was not
different from norms and was stable over time. Impacts of family life
were negative and distress was high at both time points despite a
substantially lowered COVID-19 prevalence in 2021. Parents’ perceptions
of medical care remained favourable, including the hospital being a safe
place and limited disruption to care (except for psychosocial care) and
medical decision-making. Conclusion: Both child QoL and wider
family distress were elevated across the pandemic in Australia. This
effect persisted despite the relaxation of pandemic restrictions in
2021, maintenance of high medical standards and increased access to
psychosocial care. Additional psychosocial supports, intervention and
monitoring should be considered for this population.