Childhood cancer is associated with considerable morbidity and mortality; each year, more than 400 000 children and adolescents develop cancer worldwide.1 The 5-year survival rate for childhood cancer is 80% to 85% or higher in many developed countries. Some individuals who were given a diagnosis of childhood cancer during the years 1970 to 1999 are older than 50 years today.2 Advances in genomic medicine are expected to help increase the number of childhood cancer survivors (CCS).

Unlike cancers in adults, pediatric cancers generally respond well to high-dose, combination chemotherapy; however, these patients may experience late-stage complications months to years after treatment. Other treatment modalities, such as bone marrow transplantation or radiation, also have toxic effects. Two-thirds of CCS experience at least 1 late-stage complication. Examples of such complications include endocrine or cardiovascular dysfunction or even secondary cancers.3–5 Although the mechanisms that control late-stage complications are unclear, the biological cellular senescence is likely a contributor.6 Therefore, by the age of 50 years, almost 100% of patients who are CCS will have developed potentially life-threatening, chronic health conditions resulting in secondary organ dysfunction.7 Recently, with the extended life expectancy of CCS, the late-onset cognitive impairment that develops decades after the end of treatment has become evident.4

Exercise-, diet-, and smoking cessation–based approaches may prevent and reduce some late-stage complications.3 The International Guideline Harmonization Group found that individualized surveillance and timely intervention improve the quality of life and preserve the health of CCS.5,8 As of 2017, more than 90% of providers affiliated with pediatric oncology groups in the United States offered long-term follow-up (LTFU) services for CCS, an increase from the 2007 survey; however, less than 75% of CCS in need of LTFU services receive those services.9 Future research will focus on CCS addressing the issues discussed hereinafter.

First, there is lack of research on CCS who are lost to follow-up; a study that examined the LTFU of CCS reported a steep drop from approximately 80% at 5 years to approximately 60% at 10 years and approximately 40% at 15 years.8 The largest and most extensive cohort of CCS—the Childhood Cancer Survivors Study—reported that CCS receive most of their care from primary care providers.1 However, as many late complications do not manifest until adulthood, many CCS may have a risk of not perceiving a requirement of LTFU care. For example, 1 study found that 2 years after starting LTFU, 6.9% of CCS reported that they received no regular medical care. Individuals lost to LFTU are associated with lower education, lower income, and lack of health insurance, with more socially vulnerable individuals being less likely to receive LTFU.3,4,9,10 Furthermore, LTFU (and the healthcare delivery system in general) does not tend to consider the specialized needs of adolescents and young adults, including access to public insurance or healthcare subsidies.10,11

Next, there are only limited studies on CCS from underserved populations,12 which are generally survivors and family members who can complete questionnaires and multiple interviews. For ethical reasons, it is challenging to include participants with psychiatric or chronic conditions, mental illnesses, or intellectual disabilities, or nonnative English speakers. The interviews with a relatively small number of participants identified that approximately half of the CCS exhibited psychiatric complications, including anxiety disorders, mood disorders, drug dependence, and substance abuse.13,14 Interventions based on LTFU data that exclude these socially and economically vulnerable groups often focus on education for increasing health literacy, smoking cessation programs, and exercise therapy to prevent obesity.

Finally, we present the challenges of transitioning CCS from pediatric to adult care, which is a challenging process for any condition with onset during childhood. The late complications experienced by CCS are diverse and require specialized services that are beyond the scope of primary care service providers or a children’s hospital.9 In the United States, 45% of practices that provide LTFU for CCS have an upper age limit, after which patients must transition to adult care.9 Such transition programs should be well organized and prepared to diagnose and treat complications experienced by adult CCS. The US Center for Health Care Transition Improvement has identified 6 core elements of healthcare transition, including documenting transition policies (core element 1: transition and care policy/guide), adopting transition readiness tools (core element 3: transition readiness), and obtaining feedback from young adult survivors about the process of transition.15,16 Research on CCS transitioning to adult care has focused on psychological and physical readiness and the effects of such transitions on patients’ quality of life.16

Research on CCS has been conducted primarily by pediatric healthcare professionals. However, collaborative research by pediatric and adult healthcare professionals is necessary. Childhood cancer survivors require continued healthcare system improvements based on research that contributes to increased survival and improved quality of life. Increased attention to this topic should help alleviate the physical, psychological, social, and economic impact on survivors of other rare childhood-onset diseases.

Mitsue Maru, DSN, RN
Department of Child Health Nursing, College of Nursing Art and Science, University of Hyogo, Akashi Japan
Akiko Tomioka, PhD, RN
Department of Advanced Clinical Nursing, School of Nursing, Chiba University, Japan

1. Ehrhardt MJ, Krull KR, Bhakta N, et al. Improving quality and quantity of life for childhood cancer survivors globally in the twenty-first century. Nat Rev Clin Oncol. 2023;20(10):678–696. 2. Yeh JM, Ward ZJ, Chaudhry A, et al. Life expectancy of adult survivors of childhood cancer over 3 decades. JAMA Oncol. 2020;6(3):350–357. 3. Ehrhardt MJ, Liu Q, Dixon SB, et al. Association of modifiable health conditions and social determinants of health with late mortality in survivors of childhood cancer. JAMA Netw Open. 2023;6(2):e2255395. 4. Phillips NS, Stratton KL, Williams AM, et al. Late-onset cognitive impairment and modifiable risk factors in adult childhood cancer survivors. JAMA Netw Open. 2023;6(5):e2316077. 5. International Guideline Harmonization Group for Late Effects of Childhood Cancer. International Guideline Harmonization Group, goal. https://www.ighg.org/international-guideline-harmonization-group/. Accessed December 2, 2023. 6. Kruseova J, Zichova A, Eckschlager T. Premature aging in childhood cancer survivors. Oncol Lett. 2023;25(2):43. 7. Ehrhardt MJ, Williams AM, Liu Q, et al. Cumulative burden of chronic health conditions among adolescent and young adult survivors of childhood cancer: identification of vulnerable groups at key medical transitions. Pediatr Blood Cancer. 2021;68(6):e29030. 8. Rokitka DA, Curtin C, Heffler JE, Zevon MA, Attwood K, Mahoney MC. Patterns of loss to follow-up care among childhood cancer survivors. J Adolesc Young Adult Oncol. 2017;6(1):67–73. 9. Effinger KE, Haardörfer R, Marchak JG, et al. Current pediatric cancer survivorship practices: a report from the Children’s Oncology Group. J Cancer Surviv. 2023;17(4):1139–1148. 10. McLoone JK, Sansom-Daly UM, Paglia A, et al. A scoping review exploring access to survivorship care for childhood, adolescent, and young adult cancer survivors: how can we optimize care pathways? Adolesc Health Med Ther. 2023;14:153–174. 11. Dionisi-Vici M, Godono A, Castiglione A, et al. Work placement and job satisfaction in long-term childhood cancer survivors: the impact of late effects. Cancers (Basel). 2022;14(16):3984. 12. Larsen PA, Amidi A, Ghith N, Winther JF, Pedersen C. Quality of life of adolescent and adult survivors of childhood cancer in Europe—a systematic review. Int J Cancer. 2023;153(7):1356–1375. 13. Abadie A, Massoubre C, Casagranda L, et al. Prevalence of psychiatric complications in young adults after childhood cancer treatment: results of the long-term follow-up studies in oncology. J Adolesc Young Adult Oncol. 2020;9(2):247–255. 14. Tardy F, Casagranda L, Protiere A, et al. Long-term clinical and psychiatric complications of young adults cured of a pediatric bone tumor diagnosed between 1987 and 1999 in Rhône: Alpes region (France). J Adolesc Young Adult Oncol. 2022;11(6):571–579. 15. US Center for Health Care Transition Improvement. Six Core Elements of Health Care Transition™, www.gottransition.org/six-core-elements/. Accessed December 20, 2023. 16. Marchak JG, Sadak KT, Effinger KE, et al. Transition practices for survivors of childhood cancer: a report from the Children’s Oncology Group. J Cancer Surviv. 2023;17(2):342–350.