Misconceptions and Gaps in Adolescent and Young Adult Cancer Care

Who is Considered an Adolescent or Young Adult? 

‍ Adolescents and Young Adults (AYA) typically refers to individuals between the ages of 15 and 39 who are diagnosed with cancer. While some organizations define the age range slightly differently (for example, 13–39 or 15–45), it is most commonly accepted as 15–39.

Why Adolescents and Young Adults (AYAs) are Unique

There are approximately 2.1 million AYA cancer survivors in the United States. Most are treated in either pediatric or adult healthcare settings; however, neither fully meets their unique needs.

AYAs often face challenges distinct from children and older adults, particularly related to:

• Sexuality and fertility
  
  
• Relationships and independence
  
  
• Education and employment

Research shows that AYA survivors experience higher rates of anxiety and depression compared to both individuals without cancer and older cancer survivors. They also face barriers to accessing care that other age groups may not, highlighting the urgent need for age-appropriate, specialized support.

‍

Gaps in AYA Care

Limited awareness and education around AYA cancer can create significant challenges, including:

• Delays in diagnosis and treatment
  
  
• Difficulty understanding treatment plans
  
  
• Poor symptom recognition
  
  
• Inadequate survivorship preparation
  
  

This lack of support can contribute to mistrust in healthcare systems and discourage AYAs from seeking help in the future.

Additionally, transitions of care are often not well-coordinated, leaving patients to manage on their own. Delayed diagnosis, influenced by factors such as age, gender, race, and overall health, can lead to poorer outcomes and long-term complications. AYAs also frequently lack access to age-appropriate resources and financial assistance.

‍

Mental Health in AYA Survivors

Adolescent and Young Adult cancer survivors commonly experience feelings of isolation, anger, sadness, and concern about their development. Mood and anxiety disorders occur at higher rates than in their healthy peers.

• Nearly 50% experience symptoms of Post-Traumatic Stress Disorder (PTSD)
  
  
• One-third report moderate to severe anxiety
  
  
• AYA cancer survivors also have a higher risk of suicide compared to young adults without cancer
  
  

‍

Barriers to Treatment

Financial instability can be a significant challenge both before and after diagnosis, particularly due to disruptions in health and employment. Insurance coverage and socioeconomic status must be carefully considered during treatment planning.

AYA cancer survivors may also be excluded from clinical trials due to restrictive age criteria. Additionally, fragmented collaboration between pediatric and adult care teams often results in uncoordinated care.

‍

Multicultural Considerations

AYA survivors from minority backgrounds may experience reduced access to care, delayed diagnoses, and limited availability of equitable treatment. Cultural beliefs can influence understanding of illness, conversations about death, and medical decision-making—sometimes resulting in information being withheld from the patient.

Healthcare providers must balance family involvement with ensuring patient-centered communication and support.

‍

Improving AYA Cancer Care 

To better meet the needs of AYAs, the following improvements are recommended:

• Provide healthcare professionals with training specific to AYA sensitivity and communication
  
  
• Develop comprehensive, individualized survivorship plans
  
  
• Strengthen care coordination for patients and families
  
  
• Improve access to education on AYA survivorship
  
  
• Encourage community building, inclusion, and long-term emotional support

‍

The Austin Hatcher Foundation is committed to supporting pediatric cancer patients and their families through every phase of the journey. We recognize that the challenges of cancer extend beyond survivorship, which is why it is equally important to provide support as children transition into adulthood. Our services focus on the emotional, mental, and social well-being of pediatric cancer patients, siblings, and parents—ensuring families have the resources to heal, grow, and thrive during treatment and long after. Learn more at hatcherfoundation.org. 

‍

References:

https://pmc.ncbi.nlm.nih.gov/articles/PMC8077068/

https://pmc.ncbi.nlm.nih.gov/articles/PMC11770896/

https://www.cancer.gov/types/aya https://pmc.ncbi.nlm.nih.gov/articles/PMC4319626/

https://www.ncbi.nlm.nih.gov/books/NBK179876/

https://pmc.ncbi.nlm.nih.gov/articles/PMC12090028/

https://www.cancer.gov/types/aya/support

https://pmc.ncbi.nlm.nih.gov/articles/PMC10599653/#:~:text=2.4%20%7C.&text=Defining%20the%20AYA%20population%20solely,that%20address%20their%20mutual%20concerns.

https://pmc.ncbi.nlm.nih.gov/articles/PMC11365006/#:~:text=In%20this%20cohort%20study%20of,or%20more%20of%20follow%2Dup.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10852748/

‍