The Unique Needs of Adolescent Young Adult (AYA) Oncology Patients

August 21, 2019
Adolescent young adults diagnosed with cancer have psychosocial needs that are not typically addressed in the pediatric or adult oncology setting. Dr. James Connelly of Monroe Carell Jr. Children’s Hospital at Vanderbilt will address these needs and deliver a guideline to help this unique community find appropriate support. Sharde Fultz will also share her uplifting perspective as a young survivor dealing with cGVHD.

Notes

Professional Speaker- Dr. James Connelly
Dr. Connelly developed a passion for the AYA population after his friend, roommate, and fellow med school student, got diagnosed with Leukemia in their 3rd year of med school.  He watched him pause life, saw the effect it had on his relationships, and the toll it took on every aspect of his being.  This friend today is a prominent leukemia researcher.

In the US, the AYA population is considered to be those cancer patients between ages 15-39.  It is a mix of pediatric and adult patients that are underserved, have unique needs, and are disconnected between true pediatric patients and adult patients.

Cancer treatment and the body’s response to it varies greatly between youth, adolescence, young adulthood, and those that are older.  This effects access to care and those who truly specialize in cancer care of your age group. Many AYA patients are put in pediatric protocols since they tend to have healthier organs.  Pediatrics usually have better resources, better survivorship programs, and sometimes can have transplants on an outpatient basis. Some institutions, like Dr. Connelly’s at Vanderbilt, combine pediatric and adult programs so that the specialties create a cohesive team to better meet the needs of those in the “gap” between peds and adult care.

Challenges

  1. Major life changes- this is a time of transition in so many ways.  For example, patients may be stepping away in independence and then being thrown backwards to have parents care for them.
  2. Finances are strained deeply as they often are not very far in their careers yet.
  3. They have started building a life and often have that changed.  For example, maybe a first apartment that they need to leave since they cannot work.
  4. They are in a natural time of social transitioning where they might have had their core group go in different directions and they might not have established deeper friendships with people who stand by them through this.
  5. Psychosocial distress is usually higher in this group as they have not had as much time to build life skills yet.
  6. They face challenges with reintegration into work or school.
  7. Body Image issues
  8. Perhaps added stress of finding help with young children.
  9. Often feel isolated and responses from friends are usually void since they cannot relate to what they are going through.
  10. Insurance issues.
  11. Laws that protect pediatrics are not in place for high school.
  12. Physical abilities can change and affect career paths.

Over ½ of the AYA population feel their needs are not met.

Strategies

  1. Ask your center about AYA programs and specialists, (nurses, social workers, doctors).
  2. Discuss provisions for AYA- perhaps different business hours, social spaces, etc.
  3. Ask for face to face meetings with psychological support.
  4. Reach out to places like nbmtLINK, Imerman’s Angels, or other organizations to get a peer mentor.  This is someone who has gone through this process before you.
  5. Blog to communicate and to family and friends or to connect via social media.
  6. Attend groups online with places like Stupid Cancer.
  7. Check out great websites such as stupidcancer.org, nbmtlink.org, lls.org, or livestrong.org.
  8. Look for the easiest way to communicate with your health team.  Perhaps direct messaging through your electronic file?
  9. Tell providers who you want involved in your care.
  10. Find ways to discuss your experiences with peers/family.  Could even invite a friend to go with you to treatment.
  11. Don’t be shy about discussing sexual or psychological issues with your doctor.  There are often treatments available to help.
  12. Often, people 6 months out or more try to rush into their old life activities.
  13. You can set yourself up for failure this way. It is best to start slow and steady.  For example, perhaps start with online classes and part time.
  14. Be aware that there are scholarships available to help the AYA community with college.
  15. Remember that survivorship is about your whole life.

Sharde Fultz- Young Adult Cancer Survivor

  • She was in college and receiving major scholarships to pursue a dance career when she was diagnosed.  It started with a bad cough that would not go away.
  • Diagnosis- Non-Hodgkin’s Lymphoma at age 20 in 2009
    • Mass size of small watermelon mediastinal
  • 2011 Transplant- 3 weeks (friends in for a year)
  • Hard recovery
    • Cdiff, ostomy
    • gvhd-lungs,skins, eyes- to this day these symptoms affect her
    • Lungs –collapse, rehab, oxygen, bronchiectasis
    • Vaginal gvhd and chronic cough
    • Being sick and not looking sick
    • It was hard to try to get back to life.  It required a great deal of prayer and perseverance.
    • She tried to rush back to life and wasted a lot of money, time, and disability resources since she did not understand how to navigate this area.
    • It was hard seeing friends “live on”.  Some couldn’t handle her diagnosis. It is important to be aware of their feelings too.
    • Felt very isolated, needed to develop a strong cancer support community.
    • Since she couldn’t leave her house, peer mentors and the online support from Planet Cancer were helpful.
    • Once out, she started at a young adult group at Gilda’s Club, she networked on resources, attended Cancer Con by Stupid Cancer, attended Camp Make a Dream, and attended a First Descents adventure.
    • This left her terrified and shaken, it was important for her to reach outside her comfort zone.
    • She recommends letting yourself get disability for a year window.  When trying to go back to work or school full time there were days she just couldn’t make it and needed accommodation.  Look into your rights with it to help you transition back into life.
    • You don’t know what you don’t know.  Talk to your healthcare team for tips.

What helped me:

Trusting relationship with my oncologist

  • Having a number to call at ANY time made me feel secure
  • Knowing that I didn’t have to wait at emergency with a lot of sick people
  • Community and non-profits
    • Gilda’s club
    • Next step
    • The Sam fund
    • Family and friends

Most of my education came from word of mouth and friends in the community telling me what they learned.

  • I truly love my doctors, but I felt once they saved my life, that was it. I was not prepared for the true after-care. I had no idea what my life would look like with chronic illness.
  • Importance of psychological help
    • Things would have been different if I had a psychologist or even a social worker that understood transplant or even chronic illness
    • I might be in a different place if I had a team with those individuals on it long enough to have cultivated the same trusting relationship with a mental health team as I have with my physical health team.

Ways docs can be more helpful

  • More integrative psychological support
  • Reproductive education and follow up
  • Sexual health
  • Long term side effects
  • Bedside manner/ educated nurses    ***no saying “you have the “good” one, you’re lucky…etc.**
  • Pragmatism and veracity

Here are a few organizations that you will find to be helpful with the
needs of young cancer survivors:

Elephants and Tea- support magazine for young adults/adolescents going
through cancer
elephantsandtea.com/digital_magazine/

GRYT APP- Support in your pocket
grythealth.com/the-app

*Stupid Cancer *
877-735-4673
www.stupidcancer.org

LIVESTRONG – Support for young adults with cancer
www.livestrong.org/