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

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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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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Follow-up care for childhood cancer survivors: A focus group analysis

European Journal of Cancer ◽

10.1016/j.ejca.2005.08.028 ◽

2005 ◽

Vol 41 (18) ◽

pp. 2882-2886 ◽

Cited By ~ 47

Author(s):

Emily A. Earle ◽

Helena Davies ◽

Diana Greenfield ◽

Richard Ross ◽

Christine Eiser

Keyword(s):

Focus Group ◽

Cancer Survivors ◽

Childhood Cancer ◽

Group Analysis ◽

Childhood Cancer Survivors ◽

Follow Up Care

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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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