SeriesLong-term care for people treated for cancer during childhood and adolescence
Introduction
Over the past five decades, cancer during childhood and adolescence has slowly risen in incidence. In 2020, approximately 300 000 cancers were diagnosed among those aged 19 years and younger, worldwide.1 At the same time, treatment and supportive care for children and adolescents with cancer has improved substantially. In many settings, cancers that were once uniformly fatal are now treatable. For those diagnosed during childhood in the USA, the overall proportion surviving 5 years from diagnosis has increased from 77·8% for those diagnosed in the 1990s, to 82·7% for those diagnosed in the 2000s, and to 85·4% for those diagnosed between 2010–16.2 Similar successes have been described in Australia, Canada, the UK, and Europe. Notably, for children in low-middle income countries, survival gains have been more modest.3, 4
Following cancer diagnosis at a young age, survivors confront a long survivorship phase, often spanning six decades. Over this follow-up phase, the risk of cancer recurrence decreases whereas the risk of treatment-related health problems increases. Organ systems that are developing during childhood and adolescence can be irreversibly affected by cancer treatment. Thus, although cure rates among this population are high, many survivors of childhood and adolescent cancer face a long follow-up period with numerous long-term health risks. In 2005, the seminal Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition,5 was published, highlighting this population. Since then, an increasing body of evidence has documented significantly higher levels of morbidity and early mortality in survivors diagnosed during childhood and adolescence, compared with survivors diagnosed during adulthood (figure).7, 8, 9, 10, 11 Among 5522 survivors of childhood cancer who underwent comprehensive follow-up exams, the cumulative incidence of a severe, disabling, life-threatening, or fatal chronic condition was 96%. By age 50 years, survivors have, on average, 17·1 chronic health conditions, including 4·7 graded as severe, disabling, life-threatening, or fatal. Additionally, the cumulative burden among survivors was nearly two-fold than matched community-controls (p<0·001).12 Common late effects include cardiovascular disease, respiratory dysfunction, endocrine abnormalities, and subsequent malignant neoplasm (panel, late effects). Many survivors experience multiple late effects, which act synergisticly “such that the burden of morbidity is compounded.13
In addition to the cumulative burden of treatment-related health problems, considering how survivors of childhood and adolescent cancer differ from survivors of adult cancer is important with regards to developmental stage and age at diagnosis, treatment, and into long-term follow-up. Survivors diagnosed during infancy and preschool years might experience interruptions to their early cognitive, emotional, and social development. They might begin school already experiencing difficulties with keeping up with peers14 and might have few memories of life before cancer. They will grow up to be survivors with little direct recollection of their cancer treatment and a reliance on parents, siblings, and health professionals to educate them on their future health needs.15 Survivors diagnosed during their primary school years have a sudden interruption of school and social life, yet have little experience with which to understand the complexities of their cancer treatment and long-term health effects. For survivors progressing through the developmental tasks of adolescence, cancer can severely interrupt the development of more advanced cognitive skills, identity, independence, romantic relationships, and sexuality leading to lifelong challenges in reaching their full potential.16
In this Series paper, a practical, clinically-oriented overview of childhood and adolescent cancer survivorship is provided. As in the other two papers in this series, the goals are to prepare clinicians to deliver high-quality, holistic care to this unique population of survivors of cancer and to highlight health-care delivery challenges for policymakers and other stakeholders. Importantly, the majority of research on survivors of childhood cancer has been done in high-income countries; this work reflects the existing literature while calling attention to the need for more research in low-resource settings.
Section snippets
Common issues and concerns: physical
As noted, advances in treatment for childhood cancer have been accompanied by an increasing awareness of late-occuring side-effects, or late effects. The most widely recognised of these include cardiomyopathy, endocrinopathies, impaired fertility, neurocognitive deficits, and subsequent malignant neoplasms, although every organ system and function may be affected.
Children treated at young ages or when organ systems are still developing are at increased risk of physical late effects. In
Common issues and concerns: psychological, cogitive, social, fertility, and sexual
Health-care providers should be aware that survivors of childhood and adolescent cancer are at increased risk of developing mental health difficulties. Despite the challenges they have faced, many survivors adjust well after cancer, with up to 75% reporting minimal or even positive effects on their emotional wellbeing.23 However, a cancer diagnosis during the child and adolescent years coincides with stages of rapid development of essential psychological, cognitive, and social skills. Even with
Health-care delivery challenges
In addition to the issues described by Jefford and colleagues48 some aspects of care delivery for survivors of childhood and adolescent cancer are unique. For example, this group of survivors must transition from paediatric to adult-based care. In addition, geographical mobility, engagement into the school or work setting (or lack thereof), and cancer identity (or lack thereof) are salient and changing.49 Knowledge gaps in both survivors of childhood cancer and their health-care providers have
Recommended approach for health-care providers
Previous work suggests that primary-care providers, including family and internal-medicine physicians, are willing to care for survivors of childhood cancer but have little knowledge of late effects and survivorship care resources.69 The approach to a clinical consultation with a survivor are described in detail by Emery and colleagues.55 Requesting or eliciting details of the cancer diagnosis and treatment history and addressing comorbities, like hypertension, apply equally to the survivor of
Future directions
The successes of treatment and supportive care for children and adolescents with cancer have resulted in a worldwide population of survivors at risk for myriad late effects. For this group, an increasing body of evidence has detailed the lifetime risks of physical and psychological conditions as well as social isolation and premature mortality. Some risk estimates, such as the association of second malignancy with anthracycline chemotherapy, require refinement. Population science to help us
Declaration of interests
EST is an employee of the National Cancer Institute, part of the National Institutes of Health. KCO is funded by the National Cancer Institute (CA249568 and CA134722). CW is supported by a Career Development Fellowship (1143767) and an Investigator Grant (2008300) from the National Health and Medical Research Council of Australia. All other authors declare no competing interests.
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