Jessica Beamish

and 4 more

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.