Nationwide Children’s Hospital: Meeting the Unique Needs of AYA Patients with Cancer

TON - June 2021 Vol 14, No 3
Northside Hospital Cancer Institute, Atlanta, GANationwide Children’s Hospital, Columbus, OH

Nationwide Children’s Hospital in Columbus, OH, is one of the largest pediatric hospitals in the United States and is currently ranked as one of the top 10 children’s hospitals in the country by US News & World Report’s 2020-2021 “Best Children’s Hospitals Honor Roll” list.

Nationwide Children’s Hospital is a leader in clinical care for children and adolescents with cancer and offers a wide variety of services through its diagnostic, treatment, and research facilities. It has a Comprehensive Sarcoma Program, as well as a Pediatric Bone Tumor Clinic, where patients can see all members of their treatment team in a single visit. There is also an Adolescent and Young Adult (AYA) program, which includes a joint initiative with The James Cancer Center at The Ohio State University. This program aims to meet the unique physical and psychological needs of AYA patients with cancer.

The Oncology Nurse-APN/PA (TON) spoke with Paula Sanborn, MS, APRN, FNP-C, CPHON, ONN-CG, Sarcoma Nurse Practitioner, about her roles and responsibilities at the hospital.

TON: What led to your decision to choose nursing as a profession?

Ms Sanborn: When I was young, my twin brother was ill and spent a lot of time going in and out of the hospital. I assumed the role of caregiver for him, as well as for family and friends, which came naturally to me, even at an early age.

I was accepted to Ohio State University and planned to study chemical engineering. However, during my senior year of high school, I had knee surgery and my experience with the nurses who cared for me resulted in me changing my career path to become a nurse. I attended Otterbein College in Westerville, OH, and participated in a program that allowed me to become a registered nurse in 2 years. I immediately went on to complete my bachelor’s degree in nursing while working as a registered nurse at Nationwide Children’s Hospital. In May 2020, I graduated with an Advanced Practice Nursing degree from Wright State University in Dayton, OH.

TON: What are your responsibilities at Nationwide Children’s Hospital?

Ms Sanborn: From 2011 to 2020, I was the Sarcoma Nurse Navigator. When I began, I was the first nurse navigator for sarcoma and one of the first oncology nurse navigators within pediatric oncology programs and pediatric institutions. As a result, I shared my role with other pediatric institutions. Nationwide Children’s Hospital now has 7 oncology nurse navigators: 1 pediatric embryonal tumor navigator, 2 leukemia and lymphoma navigators, 3 neuro-oncology navigators, and 1 fertility navigator.

After graduating with my Advanced Practice Nursing degree in 2020, I transitioned to become a Sarcoma Nurse Practitioner. In my role on the sarcoma team, I see patients throughout the trajectory of cancer care, from diagnosis through therapy, and, hopefully, survival. I also counsel patients, conduct physical examinations, order treatments, and collaborate with the sarcoma physicians and various members of the surgical, radiation, and advanced illness management teams.

TON: What do you consider one of the biggest rewards of your job?

Ms Sanborn: My biggest reward is caring for the patients—getting to know them and helping them and their parents become experts in their care. I love the hands-on care aspect of my job, but I also enjoy teaching patients and families. Individuals with sarcoma can have very poor outcomes and having a relationship of trust with their healthcare provider is extremely important. I enjoy taking the time to listen and get to know each one of my patients. I want to learn about them beyond their cancer journey; I want to know about their life outside of their diagnosis.

TON: What are some of the challenges associated with your job?

Ms Sanborn: Preventing delayed diagnosis in the AYA population is one of my biggest passions. Frequently, these patients are treated by providers who do not anticipate cancer in this age-group (15-39 years). As a result, some patients are misdiagnosed or receive a delayed diagnosis, which can lead to poor outcomes.

Navigating the cancer world can be very difficult for the AYA population. They are in a time of life when they would normally grow and become more independent. Cancer can negatively affect them physically, emotionally, and financially.

Another challenge is helping patients and families deal with emotional distress, especially when patients succumb to cancer. It burdens me deeply to see patients with recurrence or progression of their disease, especially when they are told there are no further options for treatment.

TON: What are you excited about in the field of oncology?

Ms Sanborn: In the past, there were not many effective drugs available to treat sarcoma, but there have been many recent advances in the field of pediatric oncology. A better understanding of tumor biology and genomics has paved the way for innovative treatment strategies with a focus on developing less toxic and better tolerated treatments. This enables us to ensure adequate quality of life, especially for patients with relapsed disease. These new treatments have led to longer survival, even for patients with metastatic disease.

Clinical trials evaluating new agents for adult cancers trickle down to pediatrics, but approval takes time. As a result, access to clinical trials for younger patients can be challenging. However, we are moving forward and finding new therapies for pediatric cancers.

I am excited about the recent development and clinical utility of chimeric antigen receptor T-cells for leukemia, natural killer cells for neuroblastoma and sarcoma, and oncolytic viruses for solid tumors and brain tumors.

TON: Tell us about your involvement with the Academy of Oncology Nurse & Patient Navigators (AONN+).

Ms Sanborn: My involvement with AONN+ over the past 6 years has helped my career as an oncology nurse by providing me with important connections and resources. Being a member of AONN+ allows me to network with other nurse navigators who understand the role. I can meet with other nurse navigators to discuss things such as compassion fatigue and the caregiver burden.

Since 2018, I have served on the Conference Planning Committee of the AONN+ Midyear Conference and the Annual Navigation & Survivorship Conference. At our recent 2021 virtual Midyear Conference, I had the opportunity to give a presentation titled “Understanding the Needs of the AYA Patient.”

TON: What is one piece of advice you would give to oncology nurses as they continue to care for AYA patients with cancer?

Ms Sanborn: One of the principles of the Ulman Foundation (a foundation that creates a community of support for young adults affected by cancer) is for the healthcare provider to “meet the patient where they are.” Going beyond the cancer diagnosis and getting to know patients and families, and understanding their unique psychosocial needs allows them to trust you as their healthcare provider. This extends to the bedside nurse, the clinic nurse, practitioners, physicians, social workers, and the rest of the healthcare team.

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