Measuring 'quality of life' is an important trend in cancer care

As novel cancer treatments continually emerge, it is essential to collect data on patients' quality of life along with how the treatment is working to extend survival. This is particularly true in young people with cancer who may be more prone to health complications later, according to a nationwide study involving children and teenagers led by AnnaLynn Williams, Ph.D., at the Wilmot Cancer Institute.

Investigators found that it is not only feasible to embed quality-of-life measurements directly into a drug trial—but in this case, results showed that the greatest quality improvements for young Hodgkin lymphoma patients occurred among those who received a newer treatment, called brentuximab vendotin (BV), added to chemotherapy.

The research is published in the Journal of Clinical Oncology.

"It has been increasingly recognized as important to study quality of life as we try to improve the patient experience and help them to make informed choices about treatment," said Williams, assistant professor of Surgery at the University of Rochester Medical Center and a member of Wilmot's Cancer Prevention and Control research program. She is also a cancer survivor.

The National Cancer Institute and U.S. Food and Drug Administration are driving this trend, the study authors noted.

URMC is also embracing quality-of-life data to improve patient care. About a year ago, at almost every doctor visit, the system began issuing a health survey at check-in. It asked patients to rate their wellness, physical function, and mental health. The data helps with communication during the visit and can inform treatment decisions.

The cancer study included 268 people, ages 11 to 21 who had high-risk pediatric Hodgkin lymphoma, a rare blood cancer. The study is believed to be the first of its kind in this group. Some patients received BV plus chemotherapy, and others received a standard chemotherapy cocktail without the newer drug.

Study coordinators met with patients in-person during clinic visits and asked them to rate their physical and mental well-being during the past week. Results were loaded into a nationwide database for the research team, which included scientists from Tufts Medical Center, University of Chicago, Roswell Park Cancer Institute, and led by the nationwide Children's Oncology Group.

Nearly 44% of the patients rated their quality of life as poor before starting treatment, but researchers saw significant improvement as treatment went on. This was particularly true of the patients who received brentuximab vendotin with chemotherapy.

Females tended to report worse quality of life than males, the study said. Researchers are unsure why but noted that hormonal changes and different coping mechanisms have been cited in other studies.

More than 90% of the patients completed the quality-of-life portion of the clinical trial. To ensure success in future studies, researchers suggested linking quality-of-life measurements to planned clinical follow-up visits after cancer treatment ends.