Defining Quality of Life: Psychologist's Questionnaires Play Growing Role in Cancer Research

Beth Fand Incollingo @fandincollingo
Published: Friday, Jun 15, 2012
Dr. David Cella from the Northwestern University/Feinberg School of Medicine

Photo courtesy of Northwestern University/Feinberg School of Medicine

David Cella, PhD

David Cella never intended to work in oncology.

At the New York Hospital-Weill Cornell Medical Center, with dreams of going into pediatric or family practice, the PhD candidate hoped to spend his predoctoral fellowship in a childhood psychiatry program. Instead, he was assigned to a one-year rotation at Memorial Sloan- Kettering Cancer Center.

As it turned out, the change in plans was a lucky break for both the doctor and the oncology community.

Putting to work the strategies he learned in graduate school to help people improve their coping and communications skills, Cella developed a questionnaire to scientifically measure the quality of life of patients being treated for cancer. Today, the Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System is widely used and has grown to include 91 questionnaires.1

“Doing research on quality of life in the mid-1980s, I realized I had been trained in something that oncology needed and needed badly—how to develop and validate a questionnaire that applies to people with cancer,” recalled Cella, 56, who serves as professor and chair of the Department of Medical Social Sciences at the Northwestern University Feinberg School of Medicine in Chicago, Illinois. “The existing questionnaires had all been developed by psychologists like me for applications in mental health, so people were applying these scales to cancer patients, and they weren’t measuring the right things. I thought, ‘I really should do this,’ so I did it. It led to FACIT, and it has become this worldwide thing.”

While most of the questionnaires are dedicated to the experience of living with cancer, its symptoms, and the side effects of related treatments, FACIT and its creator have also branched out into the study of other chronic diseases, including rheumatology, gastroenterology, nephrology, surgery, and transplantation.

Sponsors of clinical trials often voluntarily employ FACIT to determine whether a drug might improve quality of life by keeping disease progression at bay for longer—sometimes enough reason for the FDA to approve a cancer treatment, even if the therapy does not increase overall survival, said Cella.

A recent example arose when Cella oversaw the patient-reported outcomes arm of the phase III AXIS study that led to the approval of axitinib (Inlyta; Pfizer) as a second-line therapy for metastatic renal cell carcinoma (RCC). The drug demonstrated median progression-free (PFS) survival of 6.7 months versus 4.7 months with sorafenib, and the quality-of-life study that Cella conducted indicated that the PFS benefit translated into a 25% risk reduction in the worsening of advanced RCC symptoms.2

As the field goes forward, a next step will be to use FACIT scores to better characterize patient phenotypes, Cella said.

“An example is that some drugs cause extreme fatigue, but in a subset of patients only,” he said. “Now that we’ve done a good job of measuring fatigue, we can help identify patients at risk for this side effect.”

David Cella, PhD, At a Glance

Dr. David Cella
  • Is 56 years old
  • Is married and has five children ranging in age from 8 to 27. “It keeps me very busy. My kids are my main hobby,” he said.
  • Was thrilled, in 1998, to co-coach his son’s basketball team with another dad who was also a renowned professor at Northwestern University, the late Kenneth I. Howard, PhD. “He really was a faculty person I looked up to when I took his course in 1974,” Cella said, “and I was now a peer with this man who was one of my idols.”
  • Enjoyed the movie Memento, which he described as “a psychological thriller.”
  • Remembers a job as a construction laborer one winter during high school as the worst he ever had. “I was working outside in zero-degree weather carrying wood and dumping garbage,” he recalled. “We were in the middle of the demolition of a building, and I was the low guy on the totem pole. But it paid pretty well, and it helped me get through school.”
  • While earning his undergraduate degree, spent one year studying at Loyola University Chicago’s John Felice Rome Center in Rome, Italy.
  • Has won numerous awards, starting with the Carleton Blunt Distinguished Scholar Award during his undergraduate years and spanning every stage of his education and career. They include the Cornelia Perry Memorial Award to the Outstanding Postdoctoral Fellow at Memorial Sloan-Kettering Cancer Center in 1986-87, and the President’s Award and recognition for Article of the Year from the International Society for Quality of Life Research in 2008.
  • Is a member of numerous scientific trade organizations, including the American Psychological Association, the American Psychosocial Oncology Society, and the American Society of Clinical Oncology. In 2011, Cella served on the Patient Reported Outcomes and Person Centered Care in Mental Health Scientific and Advisory Board, a project of the International Center of Mental Health Policy and Economics.
  • Has generated more than 300 publications in the area of quality-of-life measurement in clinical trials and clinical practice.
  • Lives by the philosophy “Loose lips sink ships.” It’s better to keep information close to the vest when necessary, he said, than to try to explain it prematurely.

Patients’ Feelings Count in Value-Based Equations

At Northwestern, where he earned his BS in psychology in 1976 and then joined the faculty 15 years ago, Cella leads a measurement lab he describes as “dry,” equipped with computers rather than test tubes, sinks, and centrifuges, and staffed by statisticians, analysts, and survey methodologists.

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