Health care providers that classify cancer patients as children or adults often neglect the particular medical needs of adolescents and young adults, which can have serious consequences. It forces these patients to straddle two arenas of health care that aren’t equipped to deal with their unique tumor biology or the psychological, social and cultural forces that influence the diagnosis and treatment of cancer in this population, asserts Brandon Hayes-Lattin, M.D., who established the pioneering Adolescent and Young Adult (AYA) Program at Oregon Health & Science University Knight Cancer Institute.
Hayes-Lattin — who battled cancer as a young adult — is laying the groundwork for reorganizing cancer treatment programs nationwide to better meet these patients’ needs. As part of that effort, he recently led a team of experts who developed training recommendations for health care professionals, which are outlined in a paper published in the Nov. 10 print edition of the Journal of Clinical Oncology.
“Research is emerging that a number of cancers manifest themselves differently in adolescents and young adults in terms of underlying biology and how those tumors respond to treatment,” Hayes-Lattin said. “These patients also face very different emotional and social challenges in coping with cancer. It’s imperative that health care professionals understand those differences.”
The incidence of cancer in young people ages 15 to 39 has steadily increased in the past 25 years and is the leading disease-related cause of death in young adults in the United States. It affects eight times as many individuals between the ages of 15 and 39 as those who are younger than 15. For many cancers, including lymphoma, leukemia, sarcoma, melanoma, gastrointestinal stromal tumor, breast cancer and colon cancer, the epidemiology and cancer biology differ in AYA patients compared with children younger than 15 or adults older than 40. Whether they are given drugs formulated for children or adults also can affect their treatment outcome and chances for survival. The training standards published in the Journal of Clinical Oncology stem from a review initiated by Hayes-Lattin, who is leading an effort backed by the National Cancer Institute and the Lance Armstrong Foundation to improve treatment of AYA cancer patients. The recommendations call for specialized training in such key areas as:
- The factors that cause delays in diagnosis among AYA patients.
- Symptom management, body image, fertility issues and the impact of cancer on sexuality.
- Emotional issues, including how cancer can challenge an AYA patient’s faith and values, interpersonal relationships and feelings of independence.
- Substance use or abuse and its impact on treatment.
- Palliative care and end-of-life issues, which society handles differently for young people.
- Differences in how AYA patients adhere to and participate in treatment.
- Survivorship planning and the related transition in medical care.
- The use of complementary and alternative medicine along with traditional treatment.
Hayes-Lattin, an oncologist at the OHSU Knight Cancer Institute, was diagnosed with testicular cancer in 1998 while he was pursuing his residency training in internal medicine. After recovering from the disease, he resolved to help other young people cope with the complicated world of cancer diagnosis, treatment and recovery. He started the Adolescent and Young Adult Program at the OHSU Knight Cancer Institute in 2006 and that same year became the founding medical co-chair of the Lance Armstrong Foundation’s LIVESTRONG Young Adult Alliance.
With Hayes-Lattin’s leadership and expertise, the OHSU Knight Cancer Institute continues to be an innovator in this area of health care. To advance training opportunities, the OHSU Knight Cancer Institute this year added an Adolescent & Young Adult Fellowship for Pediatric Hematology-Oncology and Medical Oncology, which is supported through a grant from the American Society of Hematology. It is the first fellowship of its kind in the nation.
“After fighting cancer myself, I understood that patients’ needs go way beyond surgery or chemotherapy,” said Hayes-Lattin, who also has expertise in bone marrow transplants and blood cancers.
“Young people face concerns about how the side effects from treatment will shape the rest of their lives,” he continued. “They face questions about infertility and organ dysfunction, along with the fear that the cancer may recur at a time when they’re building careers, raising families and considering long-term financial commitments. The historic structure for cancer care fails to recognize how their journey with cancer is different and didn’t offer the help they needed to restore their lives. We are committed to changing that, and one key step is educating health care providers.”
The goal of the recommendations is to ensure that proper training is made available to build medical school curricula and continuing education programs that ultimately will improve the quality of life of adolescent and young adult cancer patients.
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About the OHSU Knight Cancer Institute
With the latest treatments, technologies, hundreds of research studies and approximately 400 clinical trials, the OHSU Knight Cancer Institute is the only National Cancer Institute-designated Cancer Center between Sacramento and Seattle— an honor earned only by the nation's top cancer centers. The honor is shared among the more than 650 doctors, nurses, scientists and staff who work together at the OHSU Knight Cancer Institute to reduce the impact of cancer. For more information visit www.ohsuhealth.com/cancer or www.facebook.com/OHSUKnight.
The Oregon Health & Science University is the state's only health and research university, and Oregon's only academic health center. OHSU is Portland's largest employer and the fourth largest in Oregon (excluding government). OHSU’s size contributes to its ability to provide many services and community support activities not found anywhere else in the state. OHSU serves patients from every corner of the state, and is a conduit for learning for more than 3,400 students and trainees. OHSU is the source of more than 200 community outreach programs that bring health and education services to every county in the state.