Gaining insight into the needs and health status of childhood cancer survivors in Latin America. An International Alliance.
By Ana Carolina Izurieta
What a great time to be an oncologist! In the last decades, there has been significant progress in risk-stratified, multimodal cancer therapy leading to a substantial increase in long-term survival rates of up to 85% for children diagnosed with cancer in high-income settings. Nevertheless, this survival rate is significantly lower and varies widely in most Latin American countries. Unfortunately, childhood cancer survivors are at high risk of enduring treatment sequelae and experiencing medical and psychosocial late effects. A patient-centered risk-based long-term follow-up is recommended, but it’s often unattainable in low-middle income countries. Childhood cancer care in Latin America is highly heterogeneous, with no standardized follow-up or surveillance programs identified at this time. Most survivors seek medical attention when symptoms occur, and a substantial proportion may face obstacles when trying to access healthcare. Moreover, there might be a global lack of awareness of the need for long-term follow-up in childhood cancer survivors, influenced by limited information provided by health professionals to survivors.
Research and well-established survivorship programs from high-income settings offer valuable lessons. However, there is an urgent need of improving Latin American local expertise and research to customize and implement interventions in local contexts. Since April 2023, an expert working group consisting of representatives from the Pan American Health Organization (PAHO)/World Health Organization (WHO), Pediatric Cancer Center Barcelona-St. Joan De Déu Hospital, St. Jude Children’s Research Hospital, Seattle Children’s Hospital, Childhood Cancer International Latin America (CCI LATAM), The International Society of Paediatric Oncology (SIOP), Sociedad Latinoamericana de Oncología Pediátrica (SLAOP) and independent researchers on pediatric cancer survivorship established to work together with Faros de Vida, a Latin American network with almost 140 childhood cancer survivors members from at least 7 Latin American Countries. This collaborative effort aims to raise awareness about childhood cancer survivorship care in the region, encourage participation of childhood cancer survivors to join this network, and identify the information needs of Latin American childhood cancer survivors regarding long-term effects of cancer treatment and their current health status. We gather monthly to identify key priorities and areas of improvement for developing local resources and support systems for childhood cancer survivors in Latin America. Currently we are developing a mixed-methods study with both a quantitative and qualitative approach on health status and information access, with special emphasis on the qualitative approach on childhood cancer survivors’ experiences, challenges, and information requirements. With this knowledge, we strive to establish task forces in different countries for crafting customized guidelines within Latin American context and to shed light on the complexity of the survivor’s journey.
If you want to join this initiative, you can keep in touch with us by emailing at [email protected] or help us spread the word. All together, we can make a difference on childhood cancer survivors in Latin America.
LATAM team (from left to right)
– Ana Carolina Izurieta-Pacheco, MD. Oncology Department, Pediatric Cancer Center Barcelona, Hospital Sant Joan de Déu, Barcelona, Spain.
– Liliana Vásquez Ponce, MD, MSc. Unit of Noncommunicable Diseases, Department of Noncommunicable Diseases and Mental Health, Pan American Health Organization/World Health Organization, Washington, DC, United States of America.
– Julia Challinor, University of California, San Francisco, CA.
– Daniel Bastardo Blanco, PhD. Strategic Communication, Education and Outreach, St. Jude Children’s Research Hospital.
– Soad Fuentes-Alabi de Aparicio, MD, MPH. Unit of Noncommunicable Diseases, Department of Noncommunicable Diseases and Mental Health, Pan American Health Organization/World Health Organization, Washington, DC, United States of America.
– David H. Noyd, MD, MPH. Pediatrics Department, Seattle Children’s Hospital/University of Washington.
– Nuria Rosell, Independent Researcher, El Salvador.
– Valeska Gonzalez, Childhood Cancer Survivor, Faros de Vida
– Marcela Zubieta, MD. ID Specialist. Oncology Unit, Hospital Exequial González Cortes, Fundación Nuestros Hijos, Santiago de Chile, LATAM CCI Head.
– Maria Fernanda Olarte-Sierra, Independent Medical Anthropology Researcher, Bogotá, Colombia.
– Roberta Ortiz, Department of Noncommunicable Diseases, World Health Organization, Geneva, Switzerland.
– Carlos Frias and Sinders Rincon, Childhood Cancer Survivors, Faros de Vida