The below article was published in the Fall 2014 issue of Vital Signs, a UCLA Health publication, and can be read in its entirety, along with video interviews of patients and doctors at the UCLA Daltrey/Townshend Teen & Young Adult Cancer Program, here.
Meeting Unmet Needs of Adolescents and Young Adults with Cancer
Cancer in adolescents and young adults is a relatively rare occurrence compared to older adults, so “they are at greater risk for delayed diagnosis, poor care coordination, limited access to clinical trials and inadequate psychosocial support,” says pediatric oncologist Jacqueline Casillas, MD, MSHS, director of the Daltrey/Townshend Teen & Young Adult Cancer Program at UCLA.
“Many medical oncologists outside the academic medical-care setting rarely see patients in this population in their daily practices, and so may not be familiar with the nuances associated with caring for patients in this age group, Dr. Casillas explains. “Consequently, adolescents and young adults may not receive the multidisciplinary care needed to optimize their survival and quality of life.”
The Daltrey/Townshend program aims to fill that gap by addressing the medical, psychosocial and supportive-care needs of adolescents and young adults, from diagnosis through survivorship. The program facilitates access to the most appropriate pediatric or adult clinical trials and research, providing appropriate psychosocial support and services for patients and their families and delivering patient-centered clinical care ina specialized, age-appropriate cancer unit — the first of its kind in the U.S.
“We established a team to pull together all of the necessary program components and to design the unit,” Dr. Casillas says. “We wanted to create a physical space that promotes healing.” An adolescent and young-adult patient-advisory group designed the logo and selected colors and images for the walls that highlight life after cancer. It also advised the team to establish a specialized unit separate from pediatric and adult units.
“Our goal is to have seamless multidisciplinary care,” says pediatric oncologist Noah Federman, MD, director of the UCLA Pediatric Bone and Soft Tissue Sarcoma Program. Sarcoma is one of the most common cancers among adolescents and young adults. “Psychosocial-support services are just as important as medical care in addressing the immediate needs of young patients with cancer,” Dr. Federman says. More recently, he says, long-term survivorship issues, particularly fertility preservation, are becoming more routinely discussed with adolescent and young-adult cancer patients.
“We tell patients that chemotherapeutic agents and radiation may cause infertility later in life so that, if that’s an important issue for them, they can consider using cryopreservation techniques before undrgoing cancer treatment,” Dr. Federman says. “We fully expect our patients to survive — we are concerened with their quality of life after cancer.”