The Unique Needs of Adolescents and Young Adults with Cancer

Experiencing disease in critical developmental, social, and reproductive years.

Posted Sep 07, 2018

co-authored by Brittany Miller, M.A.

There are approximately 70,000 new cases of cancer in adolescents and young adults (AYA; aged 15-39) each year.1 This is only nearly 5% of new cases in the United States, meaning the majority of cancer support resources are not dedicated to this group. However, AYA cancer patients are faced with specific challenges as they experience disease in critical developmental, social, and reproductive years. Cancer is more common among older adults, so AYA cancer patients share an experience to which many of their peers cannot relate. Treatment, physical changes, and time spent at medical facilities are some of the unique experiences that may isolate AYA cancer patients from their peers.

Researchers have recently studied the care and needs of the AYA cancer patient community. AYA cancer patients believe the top three barriers to best care are:

  1. a lack of programs, physicians, and care;
  2. a lack of connection to the AYA cancer patient community; and
  3. a lack of ability to navigate the health care system.2

Research has found that AYA cancer patients exhibit poorer social functioning and health-related quality of life (HRQOL) compared to their healthy counterparts, and that even though social functioning increases after diagnosis, it still remains worse than population norms.3,4 Fatigue and physical functioning are examples of aspects of HRQOL that have been reported as poorer in AYA cancer patients relative to healthy AYA.4 Research conducted outside of the United States suggest that there are gender differences in concerns of AYA cancer patients, specifically that female patients have poorer quality of life than male patients, suffering from poorer cognitive function and more fatigue.5

While resources addressing physical concerns are beneficial to cancer patients of all ages, it is less common for young people, relative to older adults, to suffer from chronic fatigue or impaired cognitive functioning. These issues can affect daily functioning that may further isolate AYA patients. Thus, these areas are a worthy focus for providers that work with this population. Additionally, resources that specifically focus on sense of belonging and community may be necessary for younger cancer patients. AYA patients found resources that focused on reducing feelings of loneliness, fostering community, and providing opportunity to meet other AYA patients to be most helpful.2 Specifically, participants found social media accounts dedicated to AYA cancer patients and family/friend support to be beneficial.2 Social media groups and communities can provide representation and a means for virtually communicating with other AYA cancer patients, which can be particularly helpful for young patients who do not have regular exposure to peers affected by cancer.

Examples of existing organizations that dedicate their resources to AYA cancer patients include Teen Cancer America and Stupid Cancer. Both consider age-specific needs of young cancer patients and work to provide a sense of community and improve specialized care. Beyond formal organizations, there has been increased visibility of AYA cancer patients in the media. Cancer survivor Suleika Jaouad, documented many aspects of her experience as a young adult with cancer in her New York Times column, Life Interrupted, in which she discussed the impact of cancer on her personal relationships with friends, her romantic partner, and her family. Similar experiences and other issues faced by young cancer patients are included as part of a series in the HuffPost blog, Generation Why. AYA cancer patients may also relate to fictional stories told in movies and books, such as The Fault in Our Stars, Me and Earl and the Dying Girl, and 50/50. It is important that AYA cancer patients continue to be represented in social and mainstream media to contribute to a sense of community this population needs.

References

1. National Cancer Institute. (2018). Adolescents and Young Adults with Cancer. Retrieved from https://www.cancer.gov/types/aya

2. Cheung, C. K., & Zebrack, B. (2017). What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients. Supportive Care in Cancer, 25, 119-126.

3. Husson, O., Zebrack, B. J., Aguilar, C., Hayes‐Lattin, B., & Cole, S. (2017). Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time? Cancer, 123, 2743-2751.

4. Smith, A. W., Bellizzi, K. M., Keegan, T. H., Zebrack, B., Chen, V. W., Neale, A. V., Hamilton, A.S., Shnorhavorian, M., & Lynch, C. F. (2013). Health-related quality of life of adolescent and young adult patients with cancer in the United States: The adolescent and young adult health outcomes and patient experience study. Journal of Clinical Oncology, 31, 2136.

5. Geue, K., Sender, A., Schmidt, R., Richter, D., Hinz, A., Schulte, T., Brähler, E., & Stöbel-Richter, Y. (2014). Gender-specific quality of life after cancer in young adulthood: A comparison with the general population. Quality of Life Research, 23, 1377-1386.