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

Survivorship care is a major area of focus in the holistic management of childhood cancer with current knowledge and information almost exclusively from high‐income countries. In this review, we summarize the state of scientific knowledge, service delivery, advocacy initiatives, and research efforts in this field in India. Twenty‐one single‐center studies published until today (20 in the last decade) confirm some of the well‐documented issues in childhood cancer survivors and highlight the high prevalence of hepatitis B and hepatitis C infection in our survivors. Heterogeneity in methodology, outcome metrics, and quality precludes drawing further conclusions, and the ongoing multicenter Indian Pediatric Oncology Group study would address this. Besides the usual model of follow‐up clinics in hospital settings, innovative models of service delivery led by not‐for‐profit organizations are being developed. Advocacy initiatives driven by survivors and support groups are also under way. All of these portend a promising future.

[1]  R. Seth,et al.  Delivery of Services to Childhood Cancer Survivors in India: A National Survey , 2020, Indian Journal of Medical and Paediatric Oncology.

[2]  B. Lindgren,et al.  Transitional care practices, services, and delivery in childhood cancer survivor programs: A survey study of U.S. survivorship providers , 2019, Pediatric blood & cancer.

[3]  R. Seth The After Treatment Completion Card (ATCC): Medical passport for pediatric cancer survivors , 2018, Pediatric Hematology Oncology Journal.

[4]  M. Schrappe,et al.  The 'Survivorship Passport' for childhood cancer survivors. , 2018, European journal of cancer.

[5]  R. Carlson,et al.  Addressing Survivorship in Cancer Care. , 2018, Journal of the National Comprehensive Cancer Network : JNCCN.

[6]  P. Nathan,et al.  Models of Care for Survivors of Childhood Cancer From Across the Globe: Advancing Survivorship Care in the Next Decade. , 2018, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[7]  R. Sarin,et al.  Efficacy of Stereotactic Conformal Radiotherapy vs Conventional Radiotherapy on Benign and Low-Grade Brain Tumors: A Randomized Clinical Trial , 2017, JAMA oncology.

[8]  Amitabh Singh,et al.  Long-term follow-up of retinoblastoma survivors: Experience from India , 2017, South Asian Journal of Cancer.

[9]  C. Wakefield,et al.  Models of childhood cancer survivorship care in Australia and New Zealand: Strengths and challenges , 2017, Asia-Pacific journal of clinical oncology.

[10]  K. Ghosh,et al.  Nucleic acid amplification testing in Indian blood banks: A review with perspectives , 2017, Indian journal of pathology & microbiology.

[11]  R. Bajpai,et al.  No impact of disease and its treatment on bone mineral density in survivors of childhood acute lymphoblastic leukemia , 2017, Pediatric blood & cancer.

[12]  S. Seth,et al.  Late effects of treatment in survivors of childhood cancers: A single-centre experience , 2017, The Indian journal of medical research.

[13]  S. Bakhshi,et al.  Indian Pediatric Oncology Group (InPOG) – Collaborative research in India comes of age , 2016 .

[14]  Sonal Sharma,et al.  Pilot initiative in India to explore the gonadal function and fertility outcomes of a cohort of childhood cancer survivors , 2016, Journal of human reproductive sciences.

[15]  A. Batra,et al.  Parents’ Perspective of Quality of Life of Retinoblastoma Survivors , 2016, Pediatric blood & cancer.

[16]  A. Batra,et al.  Short stature in retinoblastoma survivors: a cross-sectional study of 138 patients , 2016, Clinical and Translational Oncology.

[17]  A. Bhalla,et al.  Is there an increased risk of metabolic syndrome among childhood acute lymphoblastic leukemia survivors? A developing country experience , 2016, Pediatric hematology and oncology.

[18]  A. Batra,et al.  Quality of Life Assessment in Retinoblastoma: A Cross‐Sectional Study of 122 Survivors from India , 2016, Pediatric blood & cancer.

[19]  A. Batra,et al.  Long-term visual outcomes in intraocular retinoblastoma with eye preservation , 2016, Clinical and Translational Oncology.

[20]  P. Kurkure,et al.  Very small embryonic-like stem cells (VSELs) detected in azoospermic testicular biopsies of adult survivors of childhood cancer , 2015, Reproductive Biology and Endocrinology.

[21]  J. Olsen,et al.  Collaborative Research in Childhood Cancer Survivorship: The Current Landscape. , 2015, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[22]  J. Byrne,et al.  Survivorship after childhood cancer: PanCare: a European Network to promote optimal long-term care. , 2015, European journal of cancer.

[23]  A. Thakar,et al.  Ototoxicity in retinoblastoma survivors treated with carboplatin based chemotherapy: A cross‐sectional study of 116 patients , 2015, Pediatric blood & cancer.

[24]  B. Arora,et al.  Nutritional status in survivors of childhood cancer: Experience from Tata Memorial Hospital, Mumbai. , 2015, Indian journal of cancer.

[25]  L. Ramakrishnan,et al.  Adiponectin correlates with obesity: A study of 159 childhood acute leukemia survivors from India. , 2015, Indian journal of cancer.

[26]  M. Hudson,et al.  Childhood cancer survivor care: development of the Passport for Care , 2014, Nature Reviews Clinical Oncology.

[27]  R. Pandey,et al.  Vincristine-induced Neuropathy in Childhood ALL (Acute Lymphoblastic Leukemia) Survivors , 2014, Journal of child neurology.

[28]  T. Sagar,et al.  Late effects of treatment in survivors of childhood cancer from a tertiary cancer center in South India , 2014, South Asian Journal of Cancer.

[29]  M. Hudson,et al.  Survivors of childhood and adolescent cancer: life-long risks and responsibilities , 2013, Nature Reviews Cancer.

[30]  R. Skinner,et al.  Follow-Up Programs for Childhood Cancer Survivors in Europe: A Questionnaire Survey , 2012, PloS one.

[31]  R. Sarin,et al.  Early clinical outcomes demonstrate preserved cognitive function in children with average-risk medulloblastoma when treated with hyperfractionated radiation therapy. , 2012, International journal of radiation oncology, biology, physics.

[32]  D. Friedman,et al.  Cancer survivorship practices, services, and delivery: a report from the Children’s Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees , 2011, Journal of cancer survivorship : research and practice.

[33]  D. Dwyre,et al.  Hepatitis B, hepatitis C and HIV transfusion‐transmitted infections in the 21st century , 2011, Vox sanguinis.

[34]  R. Sarin,et al.  Factors influencing neurocognitive outcomes in young patients with benign and low-grade brain tumors treated with stereotactic conformal radiotherapy. , 2010, International journal of radiation oncology, biology, physics.

[35]  S. Altekruse,et al.  Outcomes for children and adolescents with cancer: challenges for the twenty-first century. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[36]  T. Eden,et al.  Epidemiology of childhood cancer in India. , 2009, Indian journal of cancer.

[37]  C. Fitzgerald,et al.  A questionnaire based review of long‐term follow‐up programs for survivors of childhood cancer in Canada , 2009, Pediatric blood & cancer.

[38]  T. Eden,et al.  The problem of treatment abandonment in children from developing countries with cancer , 2007, Pediatric blood & cancer.

[39]  Kevin C Oeffinger,et al.  Chronic health conditions in adult survivors of childhood cancer. , 2006, The New England journal of medicine.

[40]  S. Goswami,et al.  Surviving childhood cancer: what next? Issues under consideration at the After Completion of Therapy (ACT) clinic in India. , 2003, Medical and pediatric oncology.

[41]  S. Goswami,et al.  Childhood cancer survivors — living beyond cure , 2003, Indian journal of pediatrics.

[42]  Y. Joshi,et al.  Transfusion-associated hepatitis in children with hematologic malignancies in Northern India. , 2003, Medical and pediatric oncology.

[43]  R. Arceci,et al.  National Action Plan for Childhood Cancer: Report of the National Summit Meetings on Childhood Cancer * , 2002, CA: a cancer journal for clinicians.

[44]  Soundarya Mahalingam MD,et al.  Obesity, Dyslipidemia and Insulin Resistance in Survivors of Childhood Cancer , 2019, Iranian Journal of Pediatric Hematology & Oncology.

[45]  Sandeep Jain,et al.  Therapy Related AML/MDS Following Treatment for Childhood Cancer: Experience from a Tertiary Care Centre in North India , 2017, Indian Journal of Hematology and Blood Transfusion.

[46]  T. Vats,et al.  Long-term follow-up of survivors of childhood cancer , 2005, Indian journal of pediatrics.