Impact of the COVID pandemic on survivors of childhood cancer and survivorship care: lessons for the future

Abstract

Purpose The COVID pandemic has greatly impacted cancer care, with survivorship care being accorded low priority. We aimed to assess the impact of the COVID pandemic on survivorship services at our centre, as well as on survivors of childhood cancer (CCS). Methods We analyzed the trends in survivorship care at our centre from March 2020 to June 2021 compared to previous years. We also conducted an online survey of adolescent and young adult (AYA-CCS) following up at the After Completion of Treatment Clinic, Mumbai, to assess the impact of the COVID pandemic and ensuing restrictions on our cohort of survivors. Sibling responses were used as comparator (CTRI/2020/11/029029). Results There was a decrease in in-person follow-ups and increase in remote follow-ups over the first few months of the pandemic. While in-person visits steadily increased after October 2020 and reached pre-pandemic numbers, distant follow-ups continue to be higher than pre-pandemic. Evaluable responses from the survey of 88 AYA-CCS and 25 siblings revealed new-onset health concerns in 29.5% of AYA-CCS, missed follow-up visit in 52% and varying degrees of mental health issues in 12.5%. While most survivors were able to cope with the stresses of the pandemic, 20% of siblings reported being unable to cope. Conclusions Survivorship services continue to be affected well into the pandemic, with increased use of distant follow-ups. While AYA-CCS experienced significant physical, mental health issues and psychosocial concerns as a result of the COVID pandemic, they coped better than siblings during this stressful time, possibly due to multiple, holistic support systems including family, peer support groups and healthcare team. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-021-06788-4.

Long-Term Outcomes in Survivors of Childhood Cancer: A 30-Year Experience From India

“…The increasing use of telesurvivorship has emerged as a preferred mode of consultation for many survivors who might not have followed up otherwise. 27 Our analysis found a consistent decrease in the cumulative incidence of severe late effects including mortality in recent decades, as described in other, larger cohorts. 28 In our cohort, however, these findings might be confounded by the shorter duration of follow-up.…”

“…The increasing use of telesurvivorship has emerged as a preferred mode of consultation for many survivors who might not have followed up otherwise. 27 …”

Psychological distress of adolescent and young adult childhood cancer survivors in a South African cohort

“…However, the authors did not report the levels of distress in the sibling cohort. Prasad et al 53 . used a self‐designed survey and reported no difference in mental health concerns amongst a CCS cohort in India and their siblings.…”

The Care of Childhood Cancer Survivors in India: Challenges and Solutions

“…27 Analysis of the trends at our center points toward increasing use of telesurvivorship, especially in survivors with no/few late effects, easy access to technology, and stay in places distant from Mumbai. 27 However, in-person follow-ups will continue to remain high, especially in those who stay in Mumbai and surrounding areas, and those with medical/psychosocial concerns who depend on our in-house onco-endocrinology, cardio-oncology and hepatitis services, which offer subsidized care. While the majority of urban survivors have access to What-sApp and internet, there is a small proportion of survivors who lack access, and an even smaller proportion (mainly rural and semi-literate) who are uncomfortable with distant follow-up.…”

“…Our strategy during the first 15 months of the COVID pandemic has been described in detail. 27 Analysis of the trends at our center points toward increasing use of telesurvivorship, especially in survivors with no/few late effects, easy access to technology, and stay in places distant from Mumbai. 27 However, in-person follow-ups will continue to remain high, especially in those who stay in Mumbai and surrounding areas, and those with medical/psychosocial concerns who depend on our in-house onco-endocrinology, cardio-oncology and hepatitis services, which offer subsidized care.…”