Establishing a Childhood Cancer Survivorship Program in Rwanda

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.