Adolescent and young adult (AYA) survivors of childhood cancers: A challenge in after completion of therapy (ACT) clinic in resource-constrained country.

19 Background: To assess the evaluation of late effects in childhood cancer survivors who have transitioned to AYA age group on longitudinal follow up in After Completion of Therapy (ACT) clinic at Tata Memorial Hospital, Mumbai. Methods: ACT clinic database was analyzed for childhood cancer survivors who have attained age 15-30 yrs at last follow up in the clinic for demographics, grade of late effects &pattern of follow up. Results: Of 1720 childhood cancer Survivors ( > , 2 yrs off therapy & disease free) registered in ACT clinic from Feb 91-Feb15, 976(56.7%) are in AYA group, M.F = 707/269 (2.6:1), Hematolymphoid : Solid tumours = 543/433 (1.3:1), Mumbai based: Non Mumbai = 306/670 (1:2.2).Median age at diagnosis 8 yrs, current median age 20 yrs, median duration of ACT clinic follow up is 6 yrs. At registration 448 (47%) had no late effects. 230(24%) had grade I, 81(8.4%) grade II 195 (20%) had grade III. Only 9(1%) had grade IV late effects which increased to 53 (6%) at last follow up due to recurrence & second neoplasia. Only 29(3%) were at low risk of developing potential late effects. 466(48.5%) were in intermediate risk & 48.5% (466) fell in high risk category requiring at least annual follow up. 72% of survivors registered in ACT clinic from 1991-2001 had stopped follow up as compared to 36% registered in subsequent decade (p < 0.01). Conclusions: AYA survivors of childhood cancers form major (56.7%) group in Long Term Follow up clinic. The increasing incidence of life threatening late effects on longitudinal follow up combined with statistically significant increasing trend of stopping follow up over period of time since ACT registration is alarming & calls for innovative approaches for maintaining good follow up through survivor centric approaches such as use of IT based communication technologies & formation of childhood cancer survivors support groups like Ugam.

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Comprehensive clinical follow-up of late effects in childhood cancer survivors shows the need for early and well-timed intervention

Annals of Oncology ◽

10.1093/annonc/mdn778 ◽

2009 ◽

Vol 20 (7) ◽

pp. 1170-1177 ◽

Cited By ~ 32

Author(s):

J.W. Han ◽

S.Y. Kwon ◽

S.C. Won ◽

Y.J. Shin ◽

J.H. Ko ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Childhood Cancer Survivors

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Impact of using volumetric dosimetry to screen childhood cancer survivors for radiation-related late effects.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.12066 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. 12066-12066

Author(s):

Sally Cohen-Cutler ◽

Cameron Kaplan ◽

Arthur Olch ◽

Kenneth Wong ◽

Jemily Malvar ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Pure Tone ◽

Childhood Cancer Survivors ◽

Cancer Type ◽

Screening Practices ◽

Long Term Follow Up

12066 Background: Late effects screening guidelines for survivors of childhood cancer treated with radiation therapy currently use irradiated regions (IR) rather than volumetric dosimetry (VD), which more precisely identifies organs-at-risk (OAR). We recently showed that VD reduced mean number of recommended screening diagnostic imaging studies and procedures by 37.0% per patient (p<0.001).1 Here we have incorporated chemotherapy and refined volumetric dosimetry dose thresholds. Methods: This was a cross-sectional cohort study of patients (n=132) treated for cancer using computerized tomography-planned irradiation at Children’s Hospital Los Angeles from 2000-2016. For each patient, both VD and IR methods were used to determine radiation exposure to the cochlea, heart, lung, breast, and colon. Dose thresholds for VD were based on those supplied in the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines. Relevant chemotherapy exposures were recorded. Under each method, COG Long-Term Follow-Up Guidelines were applied to determine potential chemotherapy- and radiation-related late effects and their correlative screening practices (complete audiologic evaluation, pure tone audiometry, mammogram, breast MRI, echocardiogram, pulmonary functions test, and/or colonoscopy). Identified OAR were compared using Exact McNemar’s test. Total numbers of screening practices were computed using VD and IR and compared. Results: Median age at end of treatment was 10.6 years (range 1.4-20.4). The most frequent cancer type was brain tumor (45%), followed by bone and soft tissue tumor (39%) and leukemia/lymphoma (16%). Head/brain was the most commonly irradiated region (61%), followed by abdomen (22%). Anthracyclines were received by 25% of patients at < 250 mg/m2 and by 16% at ≥ 250 mg/m2. With use of VD, fewer patients were flagged for screening for each organ of interest: cochlea (-21.3%, p<0.001), heart (-22.5%, p<0.001), lung (-13.8%, p=0.219), breast (-25%, p=0.625), colon (-51.9%, p<0.001). Over the lifetime of this cohort, use of VD resulted in recommendations for 1,333 fewer pure tone audiometric tests (-21.5%), 9 fewer complete audiologic evaluations (-16.1%), 4 fewer pulmonary function tests (-13.8%), 112 fewer mammograms (-25.0%) and breast MRIs (-25.0%), 349 fewer echocardiograms (-16.1%), and 275 fewer colonoscopies (-51.9%). Conclusions: Use of VD rather than IR significantly reduces guideline-based screening for radiation-related late effects in long-term childhood cancer survivors. This work forms the basis for a comparative cost-effectiveness analysis of these two approaches. (1) Cohen-Cutler et al, Cancer Medicine, 2020.

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Identifying Priorities for Harmonizing Guidelines for the Long-Term Surveillance of Childhood Cancer Survivors in the Chinese Children Cancer Group (CCCG)

JCO Global Oncology ◽

10.1200/go.20.00534 ◽

2021 ◽

pp. 261-276

Author(s):

Yin Ting Cheung ◽

Hui Zhang ◽

Jiaoyang Cai ◽

Lung Wai Phillip Au-Doung ◽

Lok Sum Yang ◽

...

Keyword(s):

Focus Group ◽

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Childhood Cancer Survivors ◽

Delphi Survey ◽

Cancer Group ◽

Follow Up Care ◽

Survivors Of Childhood Cancer

PURPOSE Survivors of childhood cancer often experience treatment-related chronic health conditions. Given its vast population, China shares a large proportion of the global childhood cancer burden. Yet, screening and treatment of late effects in survivors of childhood cancer remain underaddressed in most regions of China. This study aimed to identify high-priority late effects for harmonizing screening guidelines within the Chinese Children's Cancer Group (CCCG), as well as barriers and enablers of the implementation of surveillance recommendations in local practice. METHODS To establish clinical consensus, 12 expert panelists who represent major institutions within the CCCG completed a Delphi survey and participated in a focus group discussion. The survey solicited ratings of the prevalence, severity, and priority for screening of 45 late effects. Major themes identified from the focus group were analyzed using thematic analysis. RESULTS The Delphi survey identified eight high-priority late effects for harmonization within CCCG: osteonecrosis, osteoporosis, left ventricular dysfunction, secondary brain tumors, treatment-related myeloid leukemia, gonadal dysfunction, growth hormone deficiency, and neurocognitive deficits. The common barriers to implementing survivorship programs include lack of support and resources for clinicians to provide follow-up care. Patients were also concerned about privacy issues and lacked awareness of late effects. Many institutions also lacked rehabilitation expertise and referral pathways. CONCLUSION By identifying obstacles related to the professional setting, patient behavior, and organization of care, our study identified resources and a framework for establishing collaborative strategies to facilitate follow-up care of childhood cancer survivors in China.

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Personalized Massive Open Online Course for Childhood Cancer Survivors: Behind the Scenes

Applied Clinical Informatics ◽

10.1055/s-0041-1725185 ◽

2021 ◽

Vol 12 (02) ◽

pp. 237-244

Author(s):

Claire Berger ◽

Léonie Casagranda ◽

Hélène Sudour-Bonnange ◽

Catherine Massoubre ◽

Jean-Hugues Dalle ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Online Courses ◽

Childhood Cancer Survivors ◽

Massive Open Online ◽

Follow Up Care ◽

Long Term Follow Up

Abstract Background Today, in France, it is estimated that 1 in 850 people aged between 20 and 45 years has been treated for childhood cancer, which equals 40,000 to 50,000 people. As late effects of the cancer and its treatment affect a large number of childhood cancer survivors (CCS) and only 30% of them benefit from an efficient long-term follow-up care for prevention, early detection, and treatment of late effects, health education of CCS represents a challenge of public health. Objectives Massive open online courses (MOOCs) are a recent innovative addition to the online learning landscape. This entertaining and practical tool could easily allow a deployment at a national level and make reliable information available for all the CCS in the country, wherever they live. Methods The MOOC team brings together a large range of specialists involved in the long-term follow-up care, but also associations of CCS, video producers, a communication consultant, a pedagogical designer, a cartoonist and a musician. We have designed three modules addressing transversal issues (lifestyle, importance of psychological support, risks of fertility problems) and eight modules covering organ-specific problems. Detailed data on childhood cancer treatments received were used to allocate the specific modules to each participant. Results This paper presents the design of the MOOC entitled “Childhood Cancer, Living Well, After,” and how its feasibility and its impact on CCS knowledge will be measured. The MOOC about long-term follow-up after childhood cancer, divided into 11 modules, involved 130 participants in its process, and resulted in a 170-minute film. The feasibility study included 98 CCS (31 males vs. 67 females; p < 0.0001). Conclusion Such personalized, free, and online courses with an online forum and a possible psychologist consultation based on unique characteristics and needs of each survivor population could improve adherence to long-term follow-up without alarming them unnecessarily.

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Use of electronic patient data storage for evaluating and setting the risk category of late effects in childhood cancer survivors

Pediatric Blood & Cancer ◽

10.1002/pbc.28678 ◽

2020 ◽

Vol 67 (11) ◽

Author(s):

Samuli Rajala ◽

Liisa S. Järvelä ◽

Anu Huurre ◽

Marika Grönroos ◽

Päivi Rautava ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Data Storage ◽

Late Effects ◽

Childhood Cancer Survivors ◽

Patient Data ◽

Risk Category

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Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study (Preprint)

10.2196/preprints.18898 ◽

2020 ◽

Author(s):

Sibylle Denzler ◽

Maria Otth ◽

Katrin Scheinemann

Keyword(s):

Observational Study ◽

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Childhood Cancer Survivors ◽

Multicenter Observational Study ◽

Follow Up Care ◽

Prospective Multicenter Observational Study

BACKGROUND Most children and adolescents diagnosed with cancer become long-term survivors. For most of them, regular follow-up examinations to detect and treat late effects are necessary, especially in adulthood. The transition from pediatric to adult-focused follow-up care is a critical moment for childhood cancer survivors (CCSs); a substantial proportion of CCSs are lost to follow-up in this transition process and do not attend follow-up care in adulthood. This can have serious effects on survivors’ health if late effects are not discovered in a timely fashion. OBJECTIVE In this study, we primarily assess the current follow-up situation, related needs, and knowledge of adolescent and young adult CCSs who have transitioned from pediatric to adult-focused follow-up care. As secondary objectives, we evaluate transition readiness, identify facilitating factors of transition and adherence to long-term follow-up (LTFU) care, and compare three different transition models. METHODS The Aftercare of Childhood Cancer Survivors (ACCS) Switzerland study is a prospective, multicenter, observational study that was approved by the ethics committee in February 2019. We are recruiting CCSs from three pediatric oncology centers and using questionnaires to answer the study questions. RESULTS To date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021. CONCLUSIONS The ACCS study will provide information on CCSs’ preferences and expectations for follow-up care and their transition into the adult setting. The results will help improve the LTFU care and cancer knowledge of CCSs and subsequently enhance adherence to follow-up care and reduce loss to follow-up in adulthood. CLINICALTRIAL ClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/18898

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Increasing and Worsening Late Effects in Childhood Cancer Survivors during Follow-up

Journal of Korean Medical Science ◽

10.3346/jkms.2013.28.5.755 ◽

2013 ◽

Vol 28 (5) ◽

pp. 755 ◽

Cited By ~ 7

Author(s):

Jung Woo Han ◽

Hyo Sun Kim ◽

Beom Sik Kim ◽

Seung Yeon Kwon ◽

Yoon Jung Shin ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Childhood Cancer Survivors

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Long-term cardiovascular disease mortality among 160 834 5-year survivors of adolescent and young adult cancer: an American population-based cohort study

European Heart Journal ◽

10.1093/eurheartj/ehaa779 ◽

2020 ◽

Cited By ~ 1

Author(s):

Lai Wang ◽

Fengjiao Wang ◽

Lianyu Chen ◽

Yawen Geng ◽

Shulin Yu ◽

...

Keyword(s):

Cardiovascular Disease ◽

General Population ◽

Cancer Survivors ◽

Childhood Cancer ◽

Childhood Cancer Survivors ◽

Adolescent And Young Adult ◽

Cns Tumours ◽

Cvd Mortality

Abstract Aims Our aim was to assess the risk of cardiovascular disease (CVD) mortality in US 5-year survivors of adolescent and young adult (AYA) cancer compared with those of the general population and contemporaneous 5-year survivors of childhood cancer. Methods and results A total of 160 834 5-year AYA cancer survivors (aged 15–39 years at diagnosis) were included, representing 2 239 390 person-years of follow-up. Overall, 2910 CVD deaths occurred, which was 1.4-fold [95% confidence interval (CI) 1.3–1.4] that expected in the general population, corresponding to 3.6 (95% CI 3.2–3.9) excess CVD deaths per 10 000 person-years. The highest risk of cardiac mortality was experienced after Hodgkin’s lymphoma (HL), and the highest risk of cerebrovascular mortality was observed with central nervous system (CNS) tumours. Even survivors in their 6th and 7th decades of life, the risk of CVD mortality remained markedly higher than that of the matched general population. Competing risk analysis showed that the cumulative mortality of CVD was elevated among AYA cancer survivors compared with childhood cancer survivors during the whole study period. Conclusion Long-term AYA cancer survivors have a greater risk of CVD mortality than the US general population and childhood cancer survivors. Vulnerable subgroups, especially survivors of HL and CNS tumours, require continued close follow-up care for cardiovascular conditions throughout survivorship.

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Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study

JMIR Research Protocols ◽

10.2196/18898 ◽

2020 ◽

Vol 9 (8) ◽

pp. e18898

Author(s):

Sibylle Denzler ◽

Maria Otth ◽

Katrin Scheinemann

Keyword(s):

Observational Study ◽

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Childhood Cancer Survivors ◽

Multicenter Observational Study ◽

Follow Up Care ◽

Prospective Multicenter Observational Study

Background Most children and adolescents diagnosed with cancer become long-term survivors. For most of them, regular follow-up examinations to detect and treat late effects are necessary, especially in adulthood. The transition from pediatric to adult-focused follow-up care is a critical moment for childhood cancer survivors (CCSs); a substantial proportion of CCSs are lost to follow-up in this transition process and do not attend follow-up care in adulthood. This can have serious effects on survivors’ health if late effects are not discovered in a timely fashion. Objective In this study, we primarily assess the current follow-up situation, related needs, and knowledge of adolescent and young adult CCSs who have transitioned from pediatric to adult-focused follow-up care. As secondary objectives, we evaluate transition readiness, identify facilitating factors of transition and adherence to long-term follow-up (LTFU) care, and compare three different transition models. Methods The Aftercare of Childhood Cancer Survivors (ACCS) Switzerland study is a prospective, multicenter, observational study that was approved by the ethics committee in February 2019. We are recruiting CCSs from three pediatric oncology centers and using questionnaires to answer the study questions. Results To date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021. Conclusions The ACCS study will provide information on CCSs’ preferences and expectations for follow-up care and their transition into the adult setting. The results will help improve the LTFU care and cancer knowledge of CCSs and subsequently enhance adherence to follow-up care and reduce loss to follow-up in adulthood. Trial Registration ClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189 International Registered Report Identifier (IRRID) PRR1-10.2196/18898

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