Late hepatic toxicity surveillance for survivors of childhood, adolescent and young adult cancer: Recommendations from the international late effects of childhood cancer guideline harmonization group

Bárdi, Edit; Mulder, Renée L.; Dalen, Elvira C. van; Bhatt, Neel S.; Ruble, Kathy; Burgis, Jennifer; Castellino, Sharon M.; Constine, Louis S.; Hoed, Caroline M. den; Green, Daniel M.; Koot, Bart; Levitt, Gill; Szönyi, László; Wallace, William H.; Skinner, Roderick; Hudson, Melissa M.; Kremer, Leontien C. M.; Effinger, Karen E.; Bresters, Dorine

doi:10.1016/j.ctrv.2021.102296

Cited by 20 publications

(7 citation statements)

References 70 publications

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“…[28] The clinical relevance of these laboratory abnormalities remains uncertain. [26] One IGHG guideline on the topic has been published, [29] referencing the same study. [28] A MEDLINE search for articles published after the scope of the Cochrane review (January 2018) did not yield additional relevant articles.…”

Section: Livermentioning

confidence: 99%

Review – Late toxicity of abdominal and pelvic radiotherapy for childhood cancer

Hessels

Langendijk

Gawryszuk

et al. 2022

Radiotherapy and Oncology

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Section: Livermentioning

confidence: 99%

Review – Late toxicity of abdominal and pelvic radiotherapy for childhood cancer

Hessels

Langendijk

Gawryszuk

et al. 2022

Radiotherapy and Oncology

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“…However, despite the increasing survival rates, childhood cancer survivors remain at risk of impaired quality of life and extensive morbidity and mortality due to disease relapse or late health complications caused by cancer treatments (late effects) [5][6][7]. Late effects can include physical as well as psychological and social conditions, ranging from subsequent neoplasms and cardiotoxicity to chronic pain and poor psychological well-being [4][5][6][7][8][9][10][11][12][13][14][15][16]. To improve or preserve the quality of life of childhood cancer survivors, long-term follow-up (LTFU) care focusing on late-effects surveillance and timely intervention is essential [17].…”

Section: Introductionmentioning

confidence: 99%

IT-Related Barriers and Facilitators to the Implementation of a New European eHealth Solution, the Digital Survivorship Passport (SurPass Version 2.0): Semistructured Digital Survey

de Beijer,

van den Oever,

Charalambous

et al. 2024

J Med Internet Res

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Background To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of the Survivorship Passport (SurPass) has been invented. Within the European PanCareSurPass project, the semiautomated and interoperable SurPass (version 2.0) will be optimized, implemented, and evaluated at 6 LTFU care centers representing 6 European countries and 3 distinct health system scenarios: (1) national electronic health information systems (EHISs) in Austria and Lithuania, (2) regional or local EHISs in Italy and Spain, and (3) cancer registries or hospital-based EHISs in Belgium and Germany. Objective We aimed to identify and describe barriers and facilitators for SurPass (version 2.0) implementation concerning semiautomation of data input, interoperability, data protection, privacy, and cybersecurity. Methods IT specialists from the 6 LTFU care centers participated in a semistructured digital survey focusing on IT-related barriers and facilitators to SurPass (version 2.0) implementation. We used the fit-viability model to assess the compatibility and feasibility of integrating SurPass into existing EHISs. Results In total, 13/20 (65%) invited IT specialists participated. The main barriers and facilitators in all 3 health system scenarios related to semiautomated data input and interoperability included unaligned EHIS infrastructure and the use of interoperability frameworks and international coding systems. The main barriers and facilitators related to data protection or privacy and cybersecurity included pseudonymization of personal health data and data retention. According to the fit-viability model, the first health system scenario provides the best fit for SurPass implementation, followed by the second and third scenarios. Conclusions This study provides essential insights into the information and IT-related influencing factors that need to be considered when implementing the SurPass (version 2.0) in clinical practice. We recommend the adoption of Health Level Seven Fast Healthcare Interoperability Resources and data security measures such as encryption, pseudonymization, and multifactor authentication to protect personal health data where applicable. In sum, this study offers practical insights into integrating digital health solutions into existing EHISs.

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“…Further, as an increasing number of children are cured of brain tumors, many have long-term health issues including seizure disorders, other neurologic effects of the primary tumor [11][12][13], and endocrinologic abnormalities [14,15]. These complications are primarily cognitive and neurologic effects of chemotherapy and radiation therapy [11][12][13][16][17][18]; endocrinologic complications resulting from surgery, radiation therapy, alkylating agents, certain tyrosine kinase inhibitors, and immune system modulators [14,15,[19][20][21][22][23][24]; organ system toxicity [22][23][24][25][26][27][28][29][30][31][32]; and psychologic and emotional effects [33][34][35][36][37].…”

Section: Introductionmentioning

confidence: 99%

The Health Care Utilization and Medical Costs in Long-Term Follow-Up of Children Diagnosed With Leukemia, Solid Tumor, or Brain Tumor: Population-Based Study Using the National Health Insurance Claims Data

Miser¹,

Shia²,

Kao³

et al. 2023

JMIR Public Health Surveill

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Background Childhood cancer survivors are at a high risk of medical consequences of their disease and treatment. There is growing information about the long-term health issues of childhood cancer survivors; however, there are very few studies describing the health care utilization and costs for this unique population. Understanding their utilization of health care services and costs will provide the basis for developing strategies to better serve these individuals and potentially reduce the cost. Objective This study aims to determine the utilization of health services and costs for long-term survivors of childhood cancer in Taiwan. Methods This is a nationwide, population-based, retrospective case-control study. We analyzed the claims data of the National Health Insurance that covers 99% of the Taiwanese population of 25.68 million. A total of 33,105 children had survived for at least 5 years after the first appearance of a diagnostic code of cancer or a benign brain tumor before the age of 18 years from 2000 to 2010 with follow-up to 2015. An age- and gender-matched control group of 64,754 individuals with no cancer was randomly selected for comparison. Utilization was compared between the cancer and no cancer groups by χ2 test. The annual medical expense was compared by the Mann-Whitney U test and Kruskal-Wallis rank-sum test. Results At a median follow-up of 7 years, childhood cancer survivors utilized a significantly higher proportion of medical center, regional hospital, inpatient, and emergency services in contrast to no cancer individuals: 57.92% (19,174/33,105) versus 44.51% (28,825/64,754), 90.66% (30,014/33,105) versus 85.70% (55,493/64,754), 27.19% (9000/33,105) versus 20.31% (13,152/64,754), and 65.26% (21,604/33,105) versus 59.36% (38,441/64,754), respectively (all P<.001). The annual total expense (median, interquartile range) of childhood cancer survivors was significantly higher than that of the comparison group (US $285.56, US $161.78-US $535.80 per year vs US $203.90, US $118.98-US $347.55 per year; P<.001). Survivors with female gender, diagnosis before the age of 3 years, and diagnosis of brain cancer or a benign brain tumor had significantly higher annual outpatient expenses (all P<.001). Moreover, the analysis of outpatient medication costs showed that hormonal and neurological medications comprised the 2 largest costs in brain cancer and benign brain tumor survivors. Conclusions Survivors of childhood cancer and a benign brain tumor had higher utilization of advanced health resources and higher costs of care. The design of the initial treatment plan minimizing long-term consequences, early intervention strategies, and survivorship programs have the potential to mitigate costs of late effects due to childhood cancer and its treatment.

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Late hepatic toxicity surveillance for survivors of childhood, adolescent and young adult cancer: Recommendations from the international late effects of childhood cancer guideline harmonization group

Cited by 20 publications

References 70 publications

Review – Late toxicity of abdominal and pelvic radiotherapy for childhood cancer

Review – Late toxicity of abdominal and pelvic radiotherapy for childhood cancer

IT-Related Barriers and Facilitators to the Implementation of a New European eHealth Solution, the Digital Survivorship Passport (SurPass Version 2.0): Semistructured Digital Survey

The Health Care Utilization and Medical Costs in Long-Term Follow-Up of Children Diagnosed With Leukemia, Solid Tumor, or Brain Tumor: Population-Based Study Using the National Health Insurance Claims Data

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