Most cancer diagnoses in the United States occur later in life, in patients older than 60 years, although most of the common pediatric diagnoses occur in those younger than 10 years. Pediatric and adult patients receive similar cancer therapies. The goal is to kill rapidly dividing cancer cells. Unfortunately, most of a child’s cells also undergo rapid division, and treatment can damage healthy tissue. Therefore, treatment that cures pediatric cancer can also cause long-term survivorship issues.
Over the decades, pediatric oncology study groups have refined treatments to minimize harmful effects while maintaining the same cure rates. However, healthy cells may still be damaged, resulting in late effects.
Roughly 70% of pediatric cancer survivors develop a chronic health condition. Physical, psychological, and cognitive effects can range from mild to life threatening. Some survivors require lifelong follow-up care with multiple subspecialists, disrupting their daily lives and possibly affecting life goals.
Physical effects include poor linear growth, endocrinopathies, infertility, lung damage, cardiac dysfunction, and recurrence. Psychological effects include post-traumatic stress disorder (see page 30) and increased anxiety. Cognitive effects include slowed processing speed and changes in executive functioning. Social effects involve isolation and educational or occupational disparities.
Some late effects develop relatively soon after completing treatment (e.g., hearing loss), whereas others worsen as a patient transitions into adulthood (e.g., cardiac dysfunction, second malignancies). In general, patients who were younger at the time of diagnosis or who received more intense multimodal treatment are at greater risk for developing late effects.
An important consideration for oncology nurses is ensuring that every survivor has a treatment summary from their healthcare institution. This helps survivors partner with their other healthcare providers throughout childhood and into adulthood to use resources like the Children’s Oncology Group guidelines to identify their individual risk factors and determine what follow-up care is needed.
When caring for patients with a recurrence or second malignancy, nurses can help survivors and their families recognize that although they may have been through the process before and are more knowledgeable than newly diagnosed patients, they still need support and advocacy. Nurses can also help ensure that the new treatment team has access to and incorporates all of the patient’s medical history when making new treatment plans. As patient advocates, nurses often encourage fertility preservation discussions with the treatment team and ensuring that pediatric patients and families feel comfortable moving forward with treatment.
Education and prevention are foundational aspects of survivorship care. Every nurse working with this population must be knowledgeable about the overall risks, ongoing needs, and what can be done to help survivors maintain wellness. Nurses also provide education and raise awareness for patients and families.
You may not always know the answer, but knowing the available resources is paramount. Refer to the COG survivorship guidelines for healthcare providers, COG’s Health Links patient resource, or the ONS Voice survivorship topic page.