Being a teenager or young adult is hard enough. Add a cancer diagnosis, and the challenges—which can range from severe fatigue to financial stress—are likely to multiply.

In part, that’s because adolescents and young adults (AYAs)—typically defined as those between 15 and 39 years old—must deal with the hardships of cancer at the same time as they are going through major physical, social, and emotional changes. As a result, AYAs with cancer and survivors are likely to need different types of support than younger children or older adults, said Pamela Wolters, Ph.D., a psychologist in NCI’s Pediatric Oncology Branch.

An increased focus on the specific treatment needs of AYAs with cancer in recent years has improved survival rates for people in this age group, said Michael Roth, M.D., co-director of the AYA Program at the University of Texas MD Anderson Cancer Center. But, Dr. Roth continued, “we don’t have enough data on how cancer and cancer treatment impact an AYA’s life—not just during treatment, but also as patients go through life beyond treatment.”

Indeed, in a soon-to-be published analysis, Dr. Roth and Susan Parsons, M.D., medical director of the Reid R. Sacco Adolescent and Young Adult Cancer Program at Tufts Medical Center, found that only about 20% of phase 3 clinical trials conducted since 2007 that included AYAs with cancer captured information from patients about their quality of life during and after treatment.

And among the trials that collected this information, there was no consistency or standardization of questionnaires used to capture these data, making it hard to compare results across studies or diseases, Dr. Parsons said.

 “We strongly believe that there are so many missed opportunities, not just to understand the AYA patient perspective, but also to determine how best to intervene to improve their lives,” Dr. Roth said.

He and Dr. Parsons co-chair a new task force that aims to address these gaps by gathering information directly from AYAs on how cancer and cancer treatments affect their quality of life—information known as patient-reported outcomes. A key goal of the task force is developing ways to standardize the collection of patient-reported outcomes from AYAs participating in clinical trials conducted through the NCI Community Oncology Research Program (NCORP) and NCI’s National Clinical Trials Network (NCTN).

The AYA Patient-Reported Outcomes Task Force, which is funded through NCI’s Childhood Cancer Data Initiative, was organized and launched last year by the Children’s Oncology Group (COG), an NCORP research base and one of five NCTN network groups.

One of the strengths of the task force, the co-chairs emphasized, is that it includes representatives from each of the NCTN network groups. By fostering collaboration across multiple clinical trial groups, the task force is expected to help greatly expand research in this area, said Alexis Bakos, Ph.D., M.P.H., a program director in NCI’s Division of Cancer Prevention.

And since cancer in AYAs is rare, standardizing data collection across NCORP and NCTN “will allow for more fruitful results” by providing data from many more AYAs using standardized measures, Dr. Bakos said.

About 89,000 AYAs are diagnosed with cancer each year in the United States, and the rate of new cases of cancer in this age group has been rising in recent decades. The number of US cancer survivors who were diagnosed as AYAs is estimated at more than 633,000 and is expected to grow substantially in the coming years.

For more details go through: Archives in Cancer Research.

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Archives in Cancer Research