St. Luke’s Mountain States Tumor Institute Pediatric Oncology Program for the Adolescent and Young Adult Population

Program Title: “Mind, Spirit and Body” – the psychosocial support delivered through a patient navigator dedicated to the Adolescent and Young Adult pediatric cancer population to meet their unique needs and support them through their life transitions.

Program Description:
St. Luke’s Mountain States Tumor Institute (MSTI) Pediatric Oncology has a strong and successful history of developing and sustaining patient and family centered programs that enhance the quality of life of pediatric cancer patients, particularly during times of transition.  Times of transition is a broad term that we have utilized to refer to the time during diagnosis and treatment as well as impacting the lives of patients as they progress through or have changes in treatment, end treatment, make life transitions, including advancing education and/or developmental levels, making friends, finding jobs, or helping surviving family members cope with loss, and the like.

Adolescents and Young Adults (AYA) deal with a lot of changes. It could be getting through high school, moving across the country to go to college, starting a new job or even having children. Imagine adding a cancer diagnosis. Unfortunately it happens. At St. Luke’s MSTI Pediatrics, we want to successfully implement a program that focuses on the AYA population, typically at our clinic ages 15 to early 20s, with a program we are calling “Mind, Spirit and Body” to help meet their unique needs and improve the chance of long-term survival and experience a normal life.

The AYA population within the pediatric cancer world have unique challenges in their lives that make successfully treating their disease challenging for the individual and the healthcare team. They don’t quite fit in — they aren’t a little kid who requires total care and direction nor are they an independent adult. Unlike the little ones, they know what it is to be sick and to miss out on typical life activities. They are caught in-between. They are also caught in-between optimal therapies, with lower overall cure rates for adolescents compared to the younger patients. The treatment teams face a huge barrier with lack of medication and treatment compliance with this age group, which contributes to lower cure rates. This age group should be thinking about pimples and proms, yet they are faced with extreme challenges—how to deal with isolation, when belonging to a group or community is fundamental to their sense of wellbeing. All they want to do is fit in and hang out with friends. Even more difficult can be reintegrating into their community after treatment is done, which can lead to a delay or even reversal in progressing through their developmental stages. AYA transitions are challenging for anyone, add in someone who is experiencing a life threatening illness, isolation, body image changes, and worries of impaired fertility in the future, when they have not even reached the age of looking for a life partner.

During times of transitions, the AYA population has an increased vulnerability. It is during this time that we feel psychosocial support is critical to their mental, spiritual, and physical health. These critical time points affect the short-term outcomes as well as have the potential for long-lasting effects that could positively or negatively impact the rest of their lives. We want to help position the patients and their families to reach the best possible outcomes. Programs would be created to meet the unique needs of AYAs as they are distinctly different than younger children or adults. It doesn’t make sense to try to fit them into a specific pediatric or adult healthcare system because they make up their own age category, which is right between the two. By having a program dedicated to AYAs, we’ll help meet their unique needs and allow them to have a life that is as uninterrupted as possible. Our AYAs are our future. We want to assist them to reach their goals by making available the appropriate resources designed specifically for them.

It is our goal to create an environment where we give and respect the voice of AYAs in treatment planning and decision making. We want to empower them and give them the tools to make successful decisions during the crucial time of therapy. Importantly, we want to help AYAs navigate their transitions through survivorship, where they can develop and maintain healthy relationships and integrate their experiences into successful adulthood while being an advocate for their own health. We plan to do that with the help of a navigator dedicated to work with AYAs and ease their burden and allow them to focus their strength and attention on treatment and healing. The navigator will identify and address potential problems and barriers to care; offer emotional support and guidance; provide opportunities to connect with other AYAs dealing with the same health concerns; and refer patients for additional resources as needed. Sometimes the best medicine for AYAs with cancer is to connect with another AYA experiencing cancer. The navigator will be a critical component to help make those connections.

The goals of each patient we treat and care for are going to be different from one another and we want to elicit that from the AYA. If the main goal is to stay in high school or college or get back to school as soon as possible, we’re going to help make that happen. Or if the main goal is to preserve fertility for the chance at having a family in the future, we’ll work with our team to provide them the best chance. No matter what their goals are, we will work together with the patient and family to help achieve them. When asking an 18-year-old young man about what it would mean to have a program like this he said, “this is more personal to me, but I missed my senior year of high school, and now trying to get my GED, I would like to have help in career planning. If I could get that help here that would be awesome.” That is an example of a goal the navigator can help with.

Our navigator will work closely with our multidisciplinary team of pediatric oncologists, surgeons, nurses and nurse practitioner, child life specialists, music therapist, and oncology physical therapist who are already delivering state-of-the-art cancer care for these patients to ensure they experience a holistic approach that nurtures the mind, spirit and body. This would include treatment planning; integrative medicine services like yoga, acupuncture and nutrition support; family planning and sexual health; and spiritual support through tough decision making.

Our timeframe will be to hire and train an AYA patient navigator by early 2017 who will provide the support and services throughout the remaining year to our AYA population. Through effective care coordination of the AYA navigator and innovative treatments, our patients can experience improved physical, mental and emotional wellbeing.

At the St. Luke’s MSTI Pediatric Oncology Clinic, we not only offer superior research-based treatment options through the Children’s Oncology Group to cure their cancer, we also want to offer outstanding creative and innovative approaches to best meet the psychosocial needs of the AYA patients’ and their families. We want to have a positive impact on their mind, spirit and body, that will help the AYA make successful life transitions, where individuals contribute fully to their level of ability.  With additional funding, we would be able to add individual guidance and interventions through a navigator that would support each AYA and make a contribution to the field of pediatric oncology by setting an example for all institutions in providing the highest level of psychosocial support to patients and their families. 

Budget Expense for 2018
Staff $48,200.00
Supplies $ 2,800.00
Total $50,000.00

This funding will support our developing AYA program (calendar year 2018), between Hyundai Hope on Wheels grant funding and permanent funding we are seeking by incorporating into
St. Luke’s MSTI annual budget. We are working closely with MSTI senior leadership, finance and data collection to make this a reality. This addresses the interim funding to ensure there is no interruption of specialized services for the AYA oncology population.

The primary expense will be for the time to cover a part time AYA Registered Nurse Navigator to provide individualized care to AYA patients and develop additional resources and services for this population.

Supplies include resources and materials as well as incentives for patient participation and encouragement in their care. Opportunities for staff education on specific AYA issues will be addressed.