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In Latin America, there is a pressing need for targeted interventions to address the physical and mental sequelae faced by pediatric cancer survivors in adulthood. While this population is generally aware of potential long-term complications, only about one third undergo regular medical checkups or have access to psychological care.

This call for better follow-up came from a study published in Pediatric Blood & Cancer, with Liliana Vásquez, MD, pediatric oncologist and childhood cancer technical officer at the Pan American Health Organization (PAHO), as a co-author.

“The results reveal a significant burden of mental health issues, lack of medical follow-up, misinformation about fertility, and structural barriers to healthcare access,” Vásquez told Medscape’s Spanish edition. “Many survivors feel isolated in facing the effects of cancer in adulthood. This is a wake-up call we cannot ignore,” she added.

The study, based on surveys, involved 135 adults (average age, 26 years; 65.9% women) who had survived pediatric cancer and were living in 16 Latin American countries. The majority of adults (84.9%) were diagnosed before the age of 15 years. Leukemia, lymphoma, and bone tumors were the most common cancers, occurring in 43.6%, 21.8%, and 7.5% of adults respectively.

Among the late complications reported, mental health conditions, endocrine disorders, cardiovascular problems, and neurocognitive difficulties were most prevalent in 61.2%, 58.6%, 42.1%, and 31.9% of adults, respectively. Additionally, 9.1% of survivors reported chronic pain.

Further investigation into mental health found that 51.1%, 31.8%, and 17.8% of participants reported experiencing anxiety, depression, or posttraumatic stress disorder, respectively. A significant proportion of survivors could not rule out the presence of anxiety (10.7%) or depression (11.4%).

Regarding physical health, the most frequently reported complications included infertility (16.9%), obesity (14%), amenorrhea (25.9%), tachycardia (17.7%), dyslipidemia (16.6%), memory problems (22.9%), and learning disorders (16%). Many participants could not rule out these complications, including 31.5% regarding infertility.

Urgency Behind the Research

Vásquez explained that the need for this research arose from a significant data gap: There is very little systematic information in Latin America about the long-term health of pediatric cancer survivors once treatment ends.

“Despite advances in treatment, the long-term effects on physical, mental, and social health have been overlooked. This publication is crucial because it highlights these challenges from the survivors’ perspective and generates concrete evidence that can guide public policies, follow-up plans, and specific programs in our region,” she said.

Rebeca Rivera-Gómez, MD, pediatric oncologist specializing in childhood cancer survivorship and head of the survivor program at the General Hospital of Tijuana in Tijuana, Mexico, although not involved in the study, agreed with its relevance. She said it “highlights the urgent need for action in an area of oncology that is often overlooked in our countries.”

“The long-term effects of treatments are already significantly impacting our survivors, reducing their quality of life. As more children and adolescents are cured, this will have a substantial impact on public health in Latin America in the medium to long term,” Rivera-Gómez added.

End of Treatment Is Not the End of Cancer

While most survivors (93.5%) reported being well informed about their cancer history, only 69.6% and 65.6% were aware of the potential physical and mental complications they could face after treatment. Additionally, 84% recognized the importance of follow-up medical exams.

However, the authors cautioned against overinterpreting these findings because many survey participants were from Faros de Vida, a Latin American survivor network that supports reintegration post-treatment. Therefore, these participants might have had more information than others.

Still, only one third of survivors (33.3%) attended regular follow-up medical appointments. The study suggests that this may be due to a lack of survival programs and disparities in healthcare access across Latin America.

In many regions, childhood cancer survivors typically seek medical attention only when symptoms become noticeable. They often face obstacles in accessing timely treatment due to primary care providers’ lack of awareness of surveillance guidelines.

“The end of treatment is not the end of cancer for our patients. Many late effects appear years later and can only be detected if we actively ask,” Vásquez warned. She added, “As doctors, we must educate ourselves in oncological follow-up, provide clear information to our patients, and not minimize issues like anxiety, infertility, or cognitive disorders. Listening and accompanying can make a big difference in a survivor’s life.”

Rivera-Gómez noted that scientific literature shows 60%-90% of childhood cancer survivors will experience some form of long-term complication, with 20%-80% facing life-threatening issues. “This topic is not optional,” she said. “Fortunately, there is online material available for training and learning how to properly follow up with our patients.”

Full Survivors, Adapted to Life

For Vásquez, the study provides valuable regional data that can support national follow-up plans, strengthen mental health services, incorporate fertility discussions into clinical practice, and develop digital tools for reliable information.

She also believes the findings could motivate the creation of dedicated follow-up clinics or the integration of these issues into primary care across Latin America.

“This study provides a solid foundation for designing interventions tailored to our reality,” said Vásquez. PAHO, under the Global Initiative for Childhood Cancer, has made survivors’ issues a regional priority.

“The visibility of this issue, evidence generation like this study, and strengthening networks like Faros de Vida are key. We’ve also introduced specific actions to improve follow-up, including training, educational materials, and promoting integrated long-term care policies,” Vásquez noted.

Rivera-Gómez highlighted that simply raising awareness through the study has already improved the management of long-term complications in survivors. “It’s crucial that everyone involved in the care of childhood cancer survivors collaborates to improve this process.” 

For the past 6 years, this initiative has provided multidisciplinary services to detect, address, and treat late complications in these patients, currently supporting around 250 individuals.

“Our goal is to equip survivors with the tools to become resilient adults with a good quality of life. There’s a new chapter after ringing the bell,” explained Rivera-Gómez.

Vásquez concluded by urging decision-makers in the region to understand that “investing in survivor care is not a luxury; it is a responsibility.” She added, “It’s time to include long-term follow-up in national childhood cancer plans, with appropriate funding, teams, and clear goals.”

Both doctors acknowledged the recent progress in Latin America regarding the detection and treatment of childhood cancer. However, the focus must now shift to ensuring that survival is both dignified and healthy.

“We are curing more children, but once they are cured, we leave them to face the world alone, with little or no information about what lies ahead. We want full survivors — empowered, resilient, and adapted to each life circumstance,” concluded Rivera-Gómez.

Vásquez and Rivera-Gómez disclosed no relevant financial relationships. 

This story was translated from Medscape’s Spanish edition.