In 2023, nearly 10,000 children in the United States under the age of 15 were diagnosed with cancer. It is the leading cause of death by disease among children, with 42 children aged 0 to 19 diagnosed daily and an average age at diagnosis of 10 years. According to Paula Sanborn, MS, APRN, FNP-C, CPHON, CPN, pediatric nurse navigators are indispensable in helping to mitigate challenges and improve overall quality of life for children and families dealing with these devastating diagnoses.
At the recent AONN+ Annual Conference, Ms Sanborn, Infectious Disease – Host Defense Team Nurse Practitioner at Nationwide Children’s Hospital, provided an in-depth look at the current state of pediatric cancer, highlighting the crucial role of pediatric nurse navigators.
The incidence of pediatric cancer has seen fluctuations in recent years, particularly impacted by the COVID-19 pandemic, which led to delays in diagnosis and an increase in metastatic cases. In the United States, approximately 1040 children are expected to die of cancer annually, and more than 40,000 undergo treatment each year. Survival rates have improved significantly, rising from 10% in the 1970s to over 85% today; however, these rates vary based on cancer type and the presence of metastatic disease at diagnosis, with the survival rate for more rare childhood cancers being much lower.
“Survival rates can vary a great deal depending on the type of cancer and other factors,” she noted. “But for pediatric cancer, the biggest factor is whether or not they have up-front metastatic disease.”
Pediatric cancers are broadly classified into hematologic malignancies and solid tumors. Common types include leukemia, brain and central nervous system tumors, lymphomas, and rhabdomyosarcomas, with each type requiring unique treatment protocols.
Pediatric nurse navigators are essential in the care and support of children with cancer. Within the complex US healthcare environment, they ensure that patients and their families receive comprehensive care and guidance throughout their treatment journey by:
Treatment for pediatric cancer often involves a combination of surgery, chemotherapy, radiation therapy, immunotherapy, and stem cell transplants.
“I think the difference between the adult world and the pediatric world is: how big is the tumor?” she explained. “If it’s not an immediate danger, we try to give chemotherapy first, because we want to stop those rapidly dividing cells and decrease the chance of it becoming metastatic.”
Whereas pediatric patients were previously thought to be unable to tolerate multiple therapies, advances in multimodality therapy have significantly improved survival rates in this population. However, these treatments come with long-term side effects that can impact growth, cognitive function, and overall quality of life for young patients. Treatments can also lead to serious physical side effects, including hearing loss, heart damage, reduced lung function, and secondary cancers.
Ms Sanborn noted that “chemo brain” can be incredibly frustrating and disappointing for kids returning to school after treatment. “They’re so excited to be done, and they just want to go back to normal life, but when they get back to school, they have a hard time retaining information, they have a hard time paying attention, and they’re extremely fatigued,” she said. “So at the end-of-therapy appointment, I tell them to please reach out if they start having problems, because we can get their teachers involved.”
Patients and families also face significant psychosocial challenges. Children may experience anxiety, depression, irritability/anger (often exacerbated by steroid treatments), and social isolation, so support from family, friends, and healthcare providers is crucial. Post-traumatic stress disorder is also common among both survivors and their families.
“Think about an 11-year-old girl who likes to go to school and likes to be with friends. Now, all of a sudden, she’s got cancer, she has no white count, and she can’t go to school,” said Ms Sanborn. “I always teach my families to just be more heightened and aware. Have hand sanitizer; make sure nobody’s sick, but let her have friends over; let her be normal as much as she can.”
Navigators can help by providing resources for counseling, support groups, coping skills, music and art therapy, and relaxation techniques. It’s also important for navigators to touch base with patients once treatment is over, as this can be a time of heightened anxiety for young patients recovering from cancer, she added.
Finally, cancer treatment invariably leads to financial strain for many families due to loss of income and increased expenses. Studies highlight that 1 in 5 families live in poverty at the time of diagnosis, and this figure can increase during treatment.
According to Ms Sanborn, survivorship care plans are essential to monitor and manage potential long-term effects for pediatric patients. This helps to ensure a better quality of life for adult survivors of childhood cancer, of whom there are approximately 483,000 currently living in the United States. To help navigators mitigate these long-term effects, the Children’s Oncology Group has published guidelines for the long-term follow-up of survivors of childhood, adolescent, and young adult cancers.
Pediatric cancer research receives a small fraction of the funding allocated to adult cancers. Only 4% of the federal cancer research budget is dedicated to pediatric cancers, emphasizing the dire need for increased investment in pediatric cancer research. Organizations such as the National Pediatric Cancer Foundation, St. Jude Children’s Research Hospital, and Alex’s Lemonade Stand Foundation are pivotal in raising funds for research and support.
The National Cancer Institute and the Children’s Oncology Group recently introduced the Pediatric MATCH trial, which uses genetic profiling to match pediatric patients with targeted therapies. This approach has shown promise in treating tumors that are resistant to standard treatments.
“Tumors that see a lot of chemotherapy or radiation tend to reinvent themselves,” Ms Sanborn noted. “They’ll respond for a while, but then they’ll rear their ugly head.”
These advances in research, coupled with the unique care strategies employed by navigators, are essential in the fight against childhood cancer.
Keep up to date with the latest news from us via social networks:
To sign up for our print publication or e-newsletter, please enter your contact information below.
