Burden of late effects and challenges faced in the long-term follow-up of paediatric germ cell tumour survivors: A report from India

Prasad, Maya; Chinnaswamy, Girish; Vora, Tushar; Goswami, Sourabh

doi:10.1016/s1569-9056(19)32544-8

Cited by 2 publications

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“…Detailed analysis of medical and psychosocial late effects in this cohort has been presented at various conferences and is the subject of a separate manuscript in preparation. [29][30][31][32][33][34][35][36] With an ever-increasing cohort of childhood cancer survivors and a limited capacity to expand further, we are attempting to decentralize care by developing a strong multicentric network of late effects clinics at our allied centers providing holistic, standardized care. Incorporation of technology to facilitate survivorship care in our cohort of largely adolescent and young adults is another priority.…”

Section: Discussionmentioning

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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Section: Discussionmentioning

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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“…They have poorer general health than people without a history of cancer [ 6 ]. In addition, more than half of these survivors have limitations in physical performance, and a third of them have limitations in daily life activities [ 7 ], along with fatigue even years after treatment [ 8 ]. Overall, 22% of post-treated people experience fatigue within the first year after completing treatment [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

Perceived vulnerability related to health in cancer post-treated adolescent in Iran: a content analysis

Akbarbegloo,

Sanaeefar,

Karimi

et al. 2024

BMC Public Health

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Background The prevalence of cancer is increasing, which significantly impacts the health and various aspects of the lives of cancer-post-treated adolescents. Adolescents with cancer have many negative consequences, including increased vulnerability. Therefore, this study aimed to explore the perceived vulnerability of cancer-post-treated adolescents using a deep examination of experiences and perceptions of participants. Methods This study was conducted on 18 participants, who were selected based on purposive sampling in 2023 using a qualitative method through a content analysis approach in Iran. A face-to-face and semi-structured individual interview was used to collect data. Inclusion criteria were children aged 11–19 years, with no history of diseases except cancer, at least one year passed since their last treatment and were aware of their disease. Inclusion criteria for other participants were Parents of childhood cancer survivors whose child is under 19 years old. Health care providers that had at least one year of experience working with and caring for pediatric cancer survivors. The research objective, participation principle, and interview recording were explained to the participants before the interview started. The criteria of credibility, dependability, confirmability and transferability were included to support the trustworthiness of data. The data was analyzed using the conventional qualitative content analysis method and MAXQDA10 software was used for data management. Results The participants included 12 cancer-post-treated adolescents, two parents, two nurses, one doctor, and one cancer charity representative. The data analysis identified three categories: “Confusion in early adolescence”, “Psychological turmoil of disease”, and “Physical burden of the disease”. Finally, the latent content was formulated in to a “Perceived vulnerability” overarching theme. Conclusion Identifying the patient’s perceptions and beliefs is one of the current health problems to improve the quality of life and facilitate the optimal transition from adolescence to adulthood and adult care. Health professionals have an opportunity to address factors that increase survivors’ sense of vulnerability to health problems by correcting knowledge gaps.

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Burden of late effects and challenges faced in the long-term follow-up of paediatric germ cell tumour survivors: A report from India

Cited by 2 publications

References 0 publications

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

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

Perceived vulnerability related to health in cancer post-treated adolescent in Iran: a content analysis

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