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

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

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

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

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

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.

scholarly journals QOS-25A STUDY OF CHILDHOOD CANCER SURVIVORS' ENGAGEMENT WITH LONG-TERM FOLLOW-UP CARE

2016 ◽  
Vol 18 (suppl 3) ◽  
pp. iii150.4-iii150
Author(s):  
Nicky Thorp ◽  
Katherine Knighting ◽  
Lucy Bray ◽  
James Hayden ◽  
Laura Elder ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Follow Up Care ◽  
Long Term Follow Up

The impact of long-term follow-up care for childhood cancer survivors: A systematic review

2017 ◽  
Vol 114 ◽  
pp. 131-138 ◽  
Author(s):  
Christina Signorelli ◽  
Claire E. Wakefield ◽  
Joanna E. Fardell ◽  
W. Hamish B. Wallace ◽  
Eden G. Robertson ◽  
...  
Keyword(s):  
Systematic Review ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Follow Up Care ◽  
Long Term Follow Up ◽  
The Impact

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

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.

Dental hygiene in childhood cancer survivors: The importance of tertiary long term follow-up care

2015 ◽  
Vol 62 (5) ◽  
pp. 921-921 ◽  
Author(s):  
Christina Signorelli ◽  
Jordana K. McLoone ◽  
Claire E. Wakefield ◽  
Richard J. Cohn
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Dental Hygiene ◽  
Childhood Cancer Survivors ◽  
Follow Up Care ◽  
Long Term Follow Up

Barriers and Facilitators of Transition from Pediatric to Adult Long-Term Follow-Up Care in Childhood Cancer Survivors

2013 ◽  
Vol 2 (3) ◽  
pp. 104-111 ◽  
Author(s):  
Zahava R. S. Rosenberg-Yunger ◽  
Anne F. Klassen ◽  
Leila Amin ◽  
Leeat Granek ◽  
Norma M. D'Agostino ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Barriers And Facilitators ◽  
Follow Up Care ◽  
Long Term Follow Up

scholarly journals Follow-up care amongst long-term childhood cancer survivors: A report from the Swiss Childhood Cancer Survivor Study

2011 ◽  
Vol 47 (2) ◽  
pp. 221-229 ◽  
Author(s):  
Cornelia E. Rebholz ◽  
Nicolas X. von der Weid ◽  
Gisela Michel ◽  
Felix K. Niggli ◽  
Claudia E. Kuehni
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cancer Survivor ◽  
Childhood Cancer Survivors ◽  
Childhood Cancer Survivor ◽  
Follow Up Care ◽  
Childhood Cancer Survivor Study

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

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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