Resumen
Introduction: The treatment of childhood cancer has been one of the great success stories of modern oncology(1, 2). Prior to the 1970s, most children or young adults diagnosed with cancer had little chance of being cured. Since then, 5-year relative survival has increased dramatically up to 80% in developed countries, especially for some types of tumors such as leukemias(3-5). As a result, the size of the population of childhood cancer survivors has grown dramatically. In Colombia there has also been a progressive increase in childhood cancer survival particularly for acute lymphoid leukemia. This improvement in survival has been due to the universalization of the Colombian health system, improved access to diagnostic technology, greater availability of drugs (allowing the implementation of multimodal and more intensive regimens), better supportive care and blood banking, and also an increase in trained human resources(6-8). Additionally, the Colombian health security system has put in place several public health measures. Along with the impressive gains in survival, late adverse events have emerged, affecting the health and quality of life of some survivors as they grow up into adulthood. Although in high-income countries the population of childhood cancer survivors has been studied for more than 20 years, in Colombia the prevalence of childhood cancer survivors is unknown, and childhood cancer survivors are not being followed nor studied.Objective: The purpose of this research was to gain an understanding of the issue of childhood cancer survivors in Colombia in a comprehensive manner.
Methods: For this, in a first instance, we aimed to quantify the incidence of childhood cancer and potential temporal trends by birth cohort and calendar year, as well as age. Additionally, we estimated population-based childhood leukemia survival at 1, 5 and 10 years after diagnosis in different cities in Colombia (Bucaramanga, Cali, Manizales and Pasto). Incidence combined with long-term survival can help us predict the expected prevalence of cancer survivors in Colombia. Then, we explored the current health status and quality of life as well as the most common health events4 in a sample of Colombian childhood cancer survivors. Additionally, we conducted a qualitative study to understand the meaning of the cancer experience of Colombian childhood cancer survivors from the embodiment perspective.
Results: A total of four studies were conducted to answer the thesis main objective. The joinpoint analysis results carried out in Study n°1 showed that there were no statistically significant changes in the estimated annual percent changes suggesting that childhood leukemia incidence trends in these cities are stable over time and that they did not show significant shifts in direction at any specific point during the analyzed time period. Additionally, analysis of age-period-cohort models for each registry revealed that age-related factors significantly underpin incidence trends of childhood leukemia in these Colombian cities. Concerning study n°2, the survival analysis showed a 5-year survival rate of around 60% for childhood leukemia, very similar to estimates from larger Colombian cities such as Cali and other Latin American countries such as Brazil and Chile. An interesting finding from our study was that the overall (OS) and the relative survival (RS) were very similar in the three PBCRs for the different follow-up periods. Combining data from studies nº1 and nº2, particularly from PBCRs of Bucaramanga, Manizales, and Pasto will be the input for estimating the prevalence of childhood cancer survivors following Verdecchia's method. For study n°3, we identified 122 participants, all of whom reported experiencing at least one health problem, with gastritis, headaches, and lack of concentration being the most prevalent ones. Moreover, participants from this study expressed concerns about difficulties in conceiving and anxiety regarding the potential vulnerability of their offspring to cancer. In general, participating Colombian childhood cancer survivors reported a good self-perceived quality of life. Finally, for study n°4 we conducted 10 life-story interviews and 0ne focus group with seven Colombian childhood cancer survivors. We developed a total of three main themes showing that the cancer experience remains significant to how participants relate to their body well into adulthood and their imagined future. First, the bodily changes resulting from cancer and its treatment increase their awareness of their own body. Second, cancer survivors make different adaptations to their body and their everyday lives as a result of the cancer experience. Finally, the bodily traces of their cancer experience persist both in their present and in their imagined future.
Conclusion: In conclusion, the series of studies contained within this thesis, which includes the two contextual studies, stand as pioneering contributions to the field of research on childhood cancer survivors in Colombia. Despite being confronted to several limitations and challenges; the findings underscore a need for survivors to be acknowledged and cared for well beyond the period of disease remission. Moving forward, we hope that the findings of this thesis can inform the development of future research studies, policy development, and clinical practice aimed at the establishment of a follow-up program for childhood cancer survivors in Colombia.
| Fecha de lectura | abr. 2024 |
|---|---|
| Idioma original | Inglés |
| Institución de lectura |
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| Supervisor | Esther De Vries (Director), Carlos Javier Rincon Rodriguez (Asesor), Jacky Fabian Armando Gil Laverde (Asesor) & Yazmin Maria Lucila Cadena Camargo (Asesor) |
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