Survivors of childhood cancer in Latin America: Role of foundations and peer groups in the lack of transition processes to adult long-term follow-up

Abstract

Background: Over the last decade, the population of childhood cancer survivors has rapidly increased in Latin America, opening a long chapter of challenges for healthcare providers in these countries to provide follow-up and adult care. Aim: In the process of exploring childhood cancer parent and patient engagement in resource-limited settings, we highlight the challenges faced by Latin American survivors from El Salvador, Mexico, and Peru as they transitioned from receiving cancer treatment to life as a cancer survivors. Methods and Results: Focus group discussions and interviews were performed as part of a larger qualitative study involving 10 low and middle-income countries in four continents regarding patient and caregiver engagement in childhood cancer treatment. We present the results of the Latin-American survivors and their experiences finishing treatment and life outside the pediatric oncology follow-up system. Themes regarding a) losing eligibility for pediatric surveillance and care, b) the importance of peer survivors, and c) the need for giving back were part of their stories. Conclusion: We suggest that given the lack of organized support from healthcare systems and providers for survivors' proper transition into adult-centered care, foundations and non-governmental organizations can provide transitional support, offer space for guidance/information, and work towards collaboration among systems for future integrated programs.