Journal of Clinical Oncology Special Series: A Roadmap to Improve Outcomes for Adolescents and Young Adults With Cancer

Feb 27, 2024

By Geraldine Carroll, ASCO Publishing

Adolescents and young adults (AYA) with cancer face unique challenges navigating treatment and survivorship during a highly transitional phase of life. In recognition, the Journal of Clinical Oncology has published a Special Series that underscores the unique developmental stages of this patient population. The series is comprised of 14 articles and provides guidance to narrow the gap in outcomes among AYA patients compared to their childhood and older adult counterparts.

“Survival among AYA patients with cancer has lagged behind their pediatric and older adult counterparts. Our Special Series collectively provides a call to action and a roadmap to reduce the AYA gap,” said series editor Smita Bhatia, MD, MPH, FASCO, distinguished professor in pediatrics and director of the Institute for Cancer Outcomes and Survivorship at the University of Alabama at Birmingham Heersink School of Medicine. “Using a multipronged approach, the roadmap addresses developing effective therapeutic approaches for AYAs that consider their unique developmental stage, improving access to therapeutic trials, and providing developmentally appropriate medical and psychosocial support through the entire disease trajectory.”

In the United States, there are approximately 90,000 AYA patients between age 15 and 39 diagnosed with cancer each year. Their experience with cancer coincides with some of life’s most formative and challenging phases, such as seeking independence from parents and becoming adults, determining educational and career paths, setting life goals, developing relationships, family planning, and parenthood.

“When cancer disrupts this natural flow of life, it can cause substantial physical, psychological, and financial burdens and other obstacles for AYA patients,” Dr. Bhatia said.

Survival Trends Among AYA Patients

The series outlines factors that have led to progress in survival outcomes as well as reasons why AYA patients have experienced lags in survival. Keegan et al provide an update on 5-year survival trends among AYA patients with cancer compared with children and older adults, reporting survival disparities by age, sex, race/ethnicity, and cancer subtype that are essential to address in future research.1

The authors reported that 73% of cancers among AYA patients had improvement in 5-year relative survival since 2000. However, despite the overall progress, some cancers had worse survival in AYA patients than younger or older patients, and others showed no improvement (osteosarcoma and male breast cancer) or decreases in survival (cervical and female bladder cancer).

Access to Care and Clinical Trials

A timely diagnosis, access to appropriate care, and having health insurance that works are among the numerous equity issues that impact patient outcomes. Kirchoff et al describe the current science on access to care for AYA patients with cancer, including the location of care, socioeconomic status, insurance needs with respect to the Affordable Care Act, barriers to clinical trial enrollment, and models of care.2

Limitations in access to and enrollment on clinical trials are cited as contributing factors to inferior outcomes in the treatment of acute lymphoblastic leukemia and other cancers addressed in the series. Investigators also cite collaborative clinical trials in the U.S. between pediatric and adult Hodgkin lymphoma (HL) investigators as a model to facilitate earlier introduction of novel agents for pediatric patients and opportunities to harmonize treatment for AYA patients with HL. Authors also explore the differences in epidemiology, biology, genomics, and therapeutic approaches for other cancers affecting the AYA community.3-7

Psychosocial Support

McGrady et al review the current literature on psychosocial needs of AYAs and provide potential interventions. The authors focus on emotional health, social functioning, health behaviors, and cancer-related cognitive impairment among AYA survivors, noting that AYA patients experience an elevated risk of emotional distress symptoms, mood and anxiety disorders, and suicide.8

Melissa Hudson, MD, FASCO, director of the Division of Cancer Survivorship at St. Jude Children’s Research Hospital and guest editor of the series, expressed concerns about the lack of attention paid to the psychosocial needs of the AYA population.

“We rally around kids. Patients get more supportive care and psychosocial services in the pediatric age range. Meanwhile, in the AYA population, there are often unaddressed worries related to the financial repercussions of having a diagnosis at this age, and its impact on work, family building, long-term health, and lifespan,” Dr. Hudson said.

She is mindful of how she communicates with AYA patients who are navigating the psychological impact of treatment and its long-term side effects. “I tell my patients, ‘If you don’t want to discuss survivorship concerns now, we are here to serve as a resource if future needs arise…’ It is important to remain available to help with these challenges during long-term survivorship,” Dr. Hudson said.

At Dr. Hudson’s institution, St. Jude, pediatric survivorship programs are staffed by advanced practice providers with oversight by physicians who have expertise in both acute oncology care and late effects. She believes there is scope for busy adult oncology practices to model St. Jude’s approach to address the needs of AYA patients.

“We recognize that oncologists have a high volume of acute care, but they could have a member of their team tasked with providing information and resources for AYA patients,” she said, adding that integrating AYA survivorship issues within their acute care model and learning from other survivorship programs would be a worthy investment in patient care.

Addressing Sexual Health

Cherven et al report on the diversity of the AYA population in terms of psychosexual development, interpersonal relationships, social and cultural factors, and varying levels of independence, which result in unique sexual health needs.9 The authors provide an overview of the relevant sexual health domains of AYA patients with cancer, and report that sexual dysfunction during and after cancer treatment is reported by 30% to 100% of AYA cancer survivors.

Additionally, AYA patients frequently identify fertility threat as a major concern. Burns et al explore the unique challenges facing AYA patients and opportunities for fertility preservation.10

Dr. Bhatia said it is crucial that fertility preservation is addressed at the time of diagnosis: “With AYA patients, there is a risk that they will have infertility, or that female patients will reach menopause at a much younger age and have a shorter window of fertility. So with this in mind, there needs to be a uniform effort to preserve fertility.”

Understanding the unique needs of AYA patients, forging collaborations across disciplines, and leveraging the strengths of pediatric and adult oncology approaches will be key to advancing cancer care for this population in the future.

Read the full Special Series.


  1. Keegan THM, Abrahão R, Alvarez EM. Survival Trends Among Adolescents and Young Adults Diagnosed With Cancer in the United States: Comparisons With Children and Older Adults. J Clin Oncol. 2023 Oct 26:JCO2301367. Epub ahead of print.
  2. Kirchhoff AC, Waters AR, Chevrier A, et al. Access to Care for Adolescent and Young Adults With Cancer in the United States: State of the Literature. J Clin Oncol. 2023 Nov 8; JCO2301027. Epub ahead of print.
  3. Newman H, Hunger SP. Future of Treatment of Adolescents and Young Adults With ALL: A Vision for Collaboration and Equity. J Clin Oncol. 2023 Oct 27:JCO2301351. Epub ahead of print.
  4. Wu J, Heidelberg RE, Gajjar A. Adolescents and Young Adults with Cancer: CNS Tumors. J Clin Oncol. 2023 Dec 8:JCO2301747. Epub ahead of print.
  5. Kelly KM, Friedberg JW. Classic Hodgkin Lymphoma in Adolescents and Young Adults. J Clin Oncol. 2023 Nov 20:JCO2301799. Epub ahead of print.
  6. Weiss AR, Harrison DJ. Soft Tissue Sarcomas in Adolescents and Young Adults. J Clin Oncol. 2023 Nov 15:JCO2301275. Epub ahead of print.
  7. Travis LB, Feldman DR, Fung C, et al. Adolescent and Young Adult Germ Cell Tumors: Epidemiology, Genomics, Treatment, and Survivorship. J Clin Oncol. 2023 Oct 11:JCO2301099. Epub ahead of print.
  8. McGrady ME, Willard VW, Williams AM, et al. Psychological Outcomes in Adolescent and Young Adult Cancer Survivors. J Clin Oncol. 2023 Nov 15:JCO2301465. Epub ahead of print.
  9. Cherven BO, Demedis J, Frederick NN. Sexual Health in Adolescents and Young Adults With Cancer. J Clin Oncol. 2023 Oct 19:JCO2301390. Epub ahead of print.
  10. Burns K, Loren AW. Fertility Preservation in Adolescents and Young Adults With Cancer: A Case-Based Review. J Clin Oncol. 2023 Nov 17:JCO2301616Epub ahead of print.
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