Although treatment advances have increased the 5-year relative survival rates across all age groups, including a 15% increase for adolescents and young adults ages 15 to 39 years,1 it varies widely for some cancers among AYAs who are diagnosed with cancer. For example, AYAs have substantially worse 5-year relative survival than children for acute lymphocytic leukemia (ALL), 60% vs 91%, respectively, and worse 5-year relative survival for female breast cancer, 86% vs 91% in older patients.2
Similarly, as in older minority adults with cancer, growing survival disparities exist for minority AYAs and those with low socioeconomic status in many additional cancers, including Hodgkin and non-Hodgkin lymphoma; melanoma; as well as testicular, colorectal, thyroid, renal, pelvic, lung, and cervical.3
Potential reasons for worse survival outcomes in the AYA population include unique tumor biology, lower clinical trial enrollment, delayed diagnosis, and significant gaps in specialized care, including the delivery of guideline-concordant care.
Elysia M. Alvarez, MD, MPH
A large population-based study by Elysia M. Alvarez, MD, MPH, Associate Professor in the Department of Pediatrics at the University of California Davis Comprehensive Cancer Center, and her colleagues, investigating the treatment patterns after initial diagnosis of germ cell tumors in AYAs has found that whereas guideline-concordant care was associated with improved survival, a substantial proportion of these patients did not receive this care.4 For this study, guideline-concordant care was defined based on guidelines primarily adapted from the Children’s Oncology Group, National Comprehensive Cancer Network, and American Urological Association guidelines.
Dr. Alvarez and her colleagues analyzed data from the California Cancer Registry of 12,453 AYA patients diagnosed with germ cell tumors, including extragonadal, ovarian, and testicular, between 2004 and 2018. The majority of patients, over 90%, had testicular cancer; early-stage disease (75.3%); and received either partial or no treatment at a specialized cancer center (77.5%). For treatment, 37.6% of patients received surgery plus chemotherapy, followed by surgery alone, 36.2%.
The study found that 64% of patients received guideline-concordant care, with rates varying depending on the primary site: 54% for extragonadal tumors; 70.1% for ovarian; and 64.6% for testicular. Receipt of guideline-concordant care was associated with better overall survival and cancer-specific survival among these patients. This was especially true for patients with testicular tumors, whose 5-year survival was higher than it was for patients with testicular cancer who had not received guideline-concordant care, 94.6% vs 91.9%, respectively. In addition, patients with testicular cancer who had not received treatment at a major cancer center were less likely to receive guideline-concordant care.
Furthermore, patients who received partial or no treatment at a specialized cancer center and those who were older, of non-Hispanic Black, Hispanic, or Asian/Pacific Islander ethnicity, who had no or public health insurance, or resided in the lowest socioeconomic status neighborhood, had worse survival.4
In this interview with The ASCO Post, Dr. Alvarez discussed the results from her study and the barriers to receiving guideline-concordant care for adolescent and young adult patients with cancer.
Ensuring Guideline-Concordant Care for AYA Patients
Your study found that 36% of AYA patients with germ cell cancers did not receive guideline-concordant care. Why are so few young patients receiving this care?
Adolescent and young adult survivors are often caught between being cared for by pediatric or adult clinicians, and by many different subspecialities, including pediatric oncologists, medical oncologists, urologists, and gynecological oncologists, often with different staging and treatment practices. These patients are also treated in a variety of settings, including Children’s Oncology Group (COG) member institutions, National Cancer Institute (NCI)-designated cancer centers, and community hospitals, which can determine the type of care patients receive.
Guest Editor
Brandon Hayes-Lattin, MD, FACP
Dr. Hayes-Lattin is Professor of Medicine and Deputy Division Head of Hematology and Medical Oncology at Oregon Health and Science University, and Medical Director of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University, Portland.
There is data suggesting that treatment at specialized cancer centers, such as COG and NCI-designated cancer centers, can improve outcomes in AYAs not just with germ cell cancers, but diagnosed with other cancers as well. Our study showed that receiving guideline-concordant care was associated with improved survival. The fact that a substantial number of patients in the study did not receive this care highlights the need to investigate the barriers to the delivery of guideline-concordant care in this patient population.
Improving Survival Outcomes
The recommendations in the guidelines call for initial evaluation of AYA patients by a multidisciplinary team, counseling on fertility and hypogonadism risks, and specific treatments, including chemotherapy and surgery. Did the patients in your study receive this multidisciplinary care?
The data we were able to extract from the California Cancer Registry included the type of treatment these patients received, such as their chemotherapy regimen, surgery, and radiation, but not whether they were seen by a multidisciplinary team. We also don’t know if these patients received fertility preservation counseling. The information we were able to retrieve was mostly based on treatment protocols and patient outcomes.
Our goal was to characterize patterns of initial cancer treatment and determine if receiving guideline-concordant care and where that treatment was delivered impacted survival outcomes, which they did.
Overcoming the Barriers to Receiving Guideline-Concordant Care
Patients with testicular germ cell cancer who had not received treatment at a specialized cancer center were less likely to receive guideline-concordant care. Please talk about the barriers to receiving this care.
We need more qualitative studies to understand why more AYA patients are not receiving guideline concordant care. We know from multiple studies looking at the barriers to receiving care at [specialty] cancer centers that lack of insurance or underinsurance; sociodemographic variables, such as race/ethnicity; socioeconomic status and living in a rural or under-resourced setting; limited access to transportation; delays in receiving care; and system and institutional factors, including lack of available AYA-specific care and low clinical trial availability; are all contributing obstacles to AYAs with cancer receiving this care.
Adolescent and young adult patients have many different clinical and psychosocial needs than pediatric and older adult patients that can often best be served at a major cancer center that can offer multidisciplinary care tailored to their diagnosis; counseling for fertility preservation and financial concerns, and psychosocial support; and access to clinical trials investigating cutting-edge therapies that may not be available in community oncology settings.
DISCLOSURE: Dr. Alvarez has no financial conflicts of interest to declare.
REFERENCES
1. Coccia PF: Overview of adolescent and young adult oncology. J Oncol Pract 15:235-237, 2019.
2. American Cancer Society: Cancer Facts & Figures:
Special Section—Adolescents and young adults. Available
at www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/special-section-cancer-in-adolescents-and-young-adults-2020.pdf. Accessed August 9, 2021.
3. Murphy CC, Lupo PJ, Roth ME, et al: Disparities in cancer survival among adolescents and young adults: A population-based study of 88,000 patients. J Natl Cancer Inst 113:1074-1083, 2021.
4. Alvarez E, Malogolowkin M, Frazier L, et al: Association of guideline-concordant care with survival in adolescent and young adult patients with germ cell tumors. J Adolesc Young Adult Oncol 15:29-39, 2026.
