Training in Long-Term Follow-Up: Fellowship in Childhood Cancer Survivorship

2020 ◽  
Author(s):  
Emily S. Tonorezos ◽  
Dana Barnea ◽  
Charles A. Sklar ◽  
Danielle Novetsky Friedman
Keyword(s):  
Childhood Cancer ◽  
Cancer Survivorship ◽  
Long Term Follow Up ◽  
Childhood Cancer Survivorship

scholarly journals Establishing a Childhood Cancer Survivorship Program in Rwanda

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 87s-87s
Author(s):  
F. Rubagumya ◽  
L. Greenberg ◽  
A. Manirakiza ◽  
A. Kanyamuhunga ◽  
A. Manirakiza ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cancer Survivorship ◽  
Childhood Cancer Survivors ◽  
Lessons Learned ◽  
Increased Risk ◽  
Childhood Cancer Survivorship ◽  
Set Up

Background: Over 80% of children diagnosed with cancer survive in high-income countries (HICs). While the survival rate remains poor in low- and middle-income countries (LMICs) such as Rwanda, a growing number of children with cancer are surviving to adulthood. These children and young adults will face an increased risk of secondary cancers and late complications from their curative treatment. Cancer centers in HICs have established Long Term Survivorship (LTS) programs to cater for childhood cancer survivors and to capture these complications and/or recurrences at an early stage. They also address the more complex psychological and social aspects of surviving cancer in childhood. Aims: To develop an LTS program in Rwanda, initial training will take place in Botswana where a pediatric hematology-oncology (PHO) program was established at the national referral hospital, Princess Marina Hospital (PMH), in 2007. This training program will allow successful methods and lessons learned from the development of an LTS program in Botswana to establish a similar program in Rwanda with ongoing bidirectional collaboration. Methods: The Texas Children's Cancer and Hematology Centers (TXCH) Global Hematology-Oncology Pediatric Excellence (HOPE) program in Botswana is the only provider of PHO care in the country, provided at PMH, through a partnership with the Botswana government. The program has over 130 childhood cancer survivors in active follow-up. A one-month bench-marking visit will be conducted. During this period, Dr. Rubagumya will spend time with the medical director of the program learning how the LTS program was established and current operations. He will spend time with clinicians during consultations to understand the scope of tests requested, frequently asked questions across all parties: clinicians, survivors and/or caretakers and use of technology to aid in the management of LTS patients. Focused interviews of clinicians, patients, caregiver and administration will be conducted to further understand the challenges of the pediatric cancer survivors and the development of an LTS program in an LMIC face. Results: After this month visit, critical areas of knowledge transfer will include: how to set up a childhood cancer survivorship programs; methods for sustainable operation of a childhood cancer LTS program, and how to help childhood cancer survivors navigate health care systems. A similar model will be established in Rwanda. Long-term mentorship with Botswana colleagues will help to build Rwanda's first LTS. Conclusion: Survivors involved in dedicated LTS follow-up care have better health outcomes. This indicates the need for life long survivorship care. There is a dearth of data on how to establish and operate a childhood cancer LTS program in LMIC settings. Lessons learned through this program will guide us on how to set up such program in Rwanda.

scholarly journals Determining transition readiness in Swiss childhood cancer survivors – a feasibility study

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maria Otth ◽  
Patrick Wechsler ◽  
Sibylle Denzler ◽  
Henrik Koehler ◽  
Katrin Scheinemann
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Self Management ◽  
Transition Readiness ◽  
Long Term Follow Up ◽  
Time Point

Abstract Background The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. Methods We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. Results We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55–71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. Conclusions The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs.

The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors

2014 ◽  
Vol 62 (2) ◽  
pp. 322-328 ◽  
Author(s):  
Morven C. Brown ◽  
Gillian A. Levitt ◽  
Eva Frey ◽  
Edit Bárdi ◽  
Riccardo Haupt ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Long Term Follow Up

scholarly journals Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study

2017 ◽  
Vol 12 (3) ◽  
pp. 277-290 ◽  
Author(s):  
A. Fuchsia Howard ◽  
Arminee Kazanjian ◽  
Sheila Pritchard ◽  
Rob Olson ◽  
Haroon Hasan ◽  
...  
Keyword(s):  
British Columbia ◽  
Qualitative Study ◽  
Childhood Cancer ◽  
Healthcare System ◽  
Adult Survivors ◽  
Long Term Follow Up ◽  
Survivors Of Childhood Cancer

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

Challenges After Curative Treatment for Childhood Cancer and Long-Term Follow up of Survivors

2010 ◽  
Vol 24 (1) ◽  
pp. 129-149 ◽  
Author(s):  
Kevin C. Oeffinger ◽  
Paul C. Nathan ◽  
Leontien C.M. Kremer
Keyword(s):  
Childhood Cancer ◽  
Curative Treatment ◽  
Long Term Follow Up
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