Childhood cancer survivorship and late effects: The landscape in India in 2020

Arora, Ramandeep Singh; Arora, Pallak; Seth, Rachna; Sharma, Sonal; Kumar, Chandan; Dhamankar, Vandana; Kurkure, Purna; Prasad, Maya

doi:10.1002/pbc.28556

Cited by 14 publications

(28 citation statements)

References 44 publications

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“…While siblings of children with cancer also face adversity and disruptions as a consequence of cancer in the family, psychological parameters in adult siblings of adult survivors of childhood cancer are comparable to the normal population [ 29 ]. Additionally, the late effects Clinic at our centre and the associated support systems were easily accessible by telephone and email to most AYA survivors of childhood cancer at our centre [ 18 ]. We had proactively reached out to our survivors, whereby concerns of several of our survey respondents might have been addressed.…”

Section: Discussionmentioning

confidence: 99%

“…The After Completion of Treatment (ACT) Clinic at Tata Memorial Hospital (TMH), Mumbai, is one of the largest late effects services in India, catering to over 3000 long-term survivors of childhood cancer from all parts of India [ 17 , 18 ]. A strict nation-wide lockdown was announced on 24th March 2020 and continued until 31st May 2020, when it was lifted in stages.…”

Section: Introductionmentioning

confidence: 99%

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

Prasad

Goswami

Deodhar

et al. 2022

Support Care Cancer

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Prasad

Goswami

Deodhar

et al. 2022

Support Care Cancer

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“…In the field of OF, India has shown a significant interest in overcoming several barriers to improve scientific knowledge, service delivery, advocacy, and research efforts (37).…”

Section: Discussionmentioning

confidence: 99%

“…We observed an important participation of India in our study ( Supplement Table 1 ), it was the fourth country to tweet about OF and FP. In the field of OF, India has shown a significant interest in overcoming several barriers to improve scientific knowledge, service delivery, advocacy, and research efforts ( 37 ).…”

Section: Discussionmentioning

confidence: 99%

Oncofertility and Fertility Preservation in Cancer Patients Across the Twitterverse

et al. 2022

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PurposeInfertility is a major problem affecting children, adolescents, and young adults (AYAs) with cancer, either due to the disease itself or because of oncologic treatment. Oncofertility (OF) focuses on counseling cancer patients about fertility risks and preservation options. However, OF and fertility preservation (FP) conversations on Twitter and their impact are unknown. We aim to characterize the users and type of content of these conversations.Materials and MethodsThis observational study analyzed tweets with the hashtags “#Oncofertility” and “#FertilityPreservation” over eight months. We classified Twitter accounts by user type and country. Tweets were categorized by content type, and retweets and likes were quantified. Descriptive statistics were used for analysis.ResultsA total of 399 tweets from 223 different accounts were evaluated. Twitter accounts comprised 22 countries and stemmed from high, upper-middle, and lower-middle-income countries in 86.5%, 5.4%, and 6.3%, respectively; no accounts from low-income countries were found. Accounts were mostly from physicians (37%) and healthcare centers (20%); we did not find any patient accounts. The most common content category was informative tweets directed to patients (30.8%), followed by discussion/sharing of medical papers (25.6%). Only 14.5% of tweets contained information about children and adolescents. Still, only 4.5% were aimed at children. Retweets were absent in 16.5% of the tweets, and 80.7% did not have comments.ConclusionOF and FP discussions on Twitter were limited to interactions among medical professionals. Also, advocacy groups showed limited activity on social media. Even though a significant proportion of tweets directed to patients were found, no active involvement of patients was observed. Finally, limited number of tweets (4.5%) were directed to children and adolescents. There is a need to raise awareness about the effects of cancer on fertility in this group. Currently, Twitter is not a resource of information for children and AYAs with cancer who need OF counseling and fertility preservation. Our results open a debate on how to promote the use of social media in the future to improve the quality of OF information available, awareness, and care since there is an unmet need for fertility preservation access in young cancer patients.

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“… 2 With the focus being improvement in cure rates, survivorship has not been a priority until recently. 3 This is unfortunate since it is well recognized that survivors of childhood cancer might have a high and varying risk of developing long-term health conditions. 4 - 6 The prevalence of late effects increases as time from cancer diagnosis elapses (beyond the fourth decade of life) such that by age 50 years, survivors experience an average of 4.7 chronic health conditions of grade 3-5, double that of age-matched controls.…”

Section: Introductionmentioning

confidence: 99%

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

Prasad

Goswami

Chinnaswamy

et al. 2022

JCO Global Oncology

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PURPOSE Despite an increasing number of survivors of childhood cancer (CCS) in low- and middle-income countries, survivorship care is in its nascent stages. We describe the spectrum of late effects seen, challenges faced, and lessons learnt over three decades of a late effects program in India. METHODS We describe the demographics and profile of late effects of all CCS survivors enrolled in our After Completion of Treatment Clinic from February 5, 1991 (inception) to February 4, 2021. We analyzed the trends by the decade of diagnosis. RESULTS There were 3,067 CCS survivors, the median age was 18 years (range, 3-57 years), and the median follow-up was 11 years (range, 2-46 years). Two thirds (62.4%) had either no or mild late effects, 480 (15.6%), 497 (16.2%), and 162 (5.3%) had grades 2, 3, and 4 late effects, with 67 deaths reported. Notable late effects were chronic viral hepatitis (7.8%), thyroid dysfunction (7.5%), other endocrine issues (13.6%), psychosocial issues (57%), neurocognitive impairment (4.1%), and metabolic syndrome (4%). The cumulative incidence and severity of late effects showed a consistent decline by the decade of diagnosis. Twenty-two percent of survivors are lost to follow-up. CONCLUSION Survivors of childhood cancer treated on contemporary treatment protocols have a significantly lower side-effect profile. Attrition to long-term follow-up and psychosocial issues are significant concerns. Understanding the unique spectrum of late effects and establishing a holistic support system go a long way in ensuring the long-term physical and mental health and psychosocial concerns of childhood cancer survivors in low- and middle-income countries.

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Childhood cancer survivorship and late effects: The landscape in India in 2020

Cited by 14 publications

References 44 publications

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

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

Oncofertility and Fertility Preservation in Cancer Patients Across the Twitterverse

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

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