Creating the tools that measure quality of life

Some of them can help physicians compare and tailor cancer treatments.

By Rebecca A. Clay

Being able to worry about quality of life for cancer survivors is a relatively recent luxury.

"If you did a lit search for titles or abstracts that included the terms 'cancer' and 'quality of life' in 1980, the number of items you would have found would have been trivial," says David Cella, PhD, director of the Center on Outcomes Research and Education at Evanston Northwestern Healthcare in Illinois. "Now that number is in the thousands. There has been a logarithmic increase in interest in quality of life for cancer patients."

With the number of survivors now surpassing eight million in this country alone, Cella and other psychologists are developing instruments to assess survivors' quality of life. These tools can help patients, practitioners and researchers predict outcomes, compare treatments and target interventions most effectively.

"In the 1980s, all we had to choose from were standard psychological scales that were inappropriate at best and offensive at worst," says Cella, noting that the instruments' emphasis on psychiatric symptomatology didn't apply to psychologically healthy people with cancer. "Today there's more work on quality of life done in cancer than in any other disease."

Cella's quality-of-life questionnaire--one of several now available--has become the most widely used assessment tool for adult cancer patients in North America. Cella first started developing the Functional Assessment of Cancer Therapy (FACT) in 1987 at the request of one of the National Cancer Institute-supported cooperative cancer research groups.

Since translated into more than 30 languages, FACT consists of general questions about physical, functional, emotional and social well-being, plus specific questions for each type of cancer. Lung-cancer patients get questions about shortness of breath and chest pain, for instance, while brain-cancer patients get questions about concentration and memory.

Assessments like FACT help convince physicians to pay attention to quality-of-life issues, as well as purely medical ones, says Cella, who is also a professor of psychiatry and behavioral science at Northwestern University Medical School.

Take Cella's recent study of lung-cancer patients, for example. As a predictor of patients' survival rates, FACT scores outperformed all other measures-- including how advanced patients' cancer was, what treatment they received and how their physicians rated patients' health before they started therapy.

Changes in FACT scores also helped predict outcomes, Cella discovered. Patients whose scores started low and fell even further during the course of treatment had a median survival rate of just 5 1/2 months, compared to 10 months for lung-cancer patients overall. Those whose scores started out high and rose during treatment had a 16-month median survival rate.

Cella is now working on a project that will help physicians use FACT scores as they make decisions about their patients' treatment.

Increasing survival rates for pediatric cancer patients has also sparked a new interest in quality-of-life assessments aimed at children and their families.

Daniel Armstrong, PhD, for instance, has developed an assessment tool called the Miami Pediatric Quality of Life Questionnaire. To construct the instrument, Armstrong conducted in-depth interviews with 30 families whose children represented three age groups and both minimal and severe treatment regimens.

The resulting questionnaire measures social competence factors such as involvement with peers and participation in school activities, emotional stability factors such as anxiety and depression and self-competence factors--a category that includes the ability to plan for the future, organize activities and initiate interactions.

The questionnaire has a variety of uses, says Armstrong, director of the Mailman Center for Child Development at the University of Miami School of Medicine. Investigators can use data from the questionnaire to compare treatment strategies that may have equivalent clinical effectiveness. And physicians can use the data as part of an informed-consent process for parents unsure about how to balance clinical efficacy and quality of life.

The questionnaire has already yielded some surprises, says Armstrong. For instance, practitioners had long assumed that "limb salvaging"--a complex procedure that involves implanting mechanical devices or a cadaver bone in a patient's body--resulted in better body image and higher quality of life than amputation. Not so, says Armstrong. His questionnaire revealed that amputees actually have much higher quality of life, perhaps because they spent less time in the hospital.

Other psychologists are exploring alternative approaches that let children--rather than investigators--define the quality-of-life issues that are important to them.

Michael A. Zevon, PhD, and James P. Donnelly, PhD, for example, don't have a measurement tool per se but have instead developed a process they believe produces a truer picture of children's quality of life.

"Rather than saying, 'Based on the literature, these are the important dimensions we should measure,' we're looking at quality of life based on the child's own perceptions," says Zevon, director of the psychosocial oncology program at the Roswell Park Cancer Institute in Buffalo. "We're trying to work from the child out rather than the outside in."

To accomplish that goal, Zevon brings together 10 to 15 children and asks them to jot down all the things they feel are important to their quality of life. Next children sort the note cards into piles representing general categories, such as "school" or "friends." Then Zevon feeds the information into a computer to produce "maps" of children's priorities. Those priority areas become target areas for intervention.

Says Zevon, "We go straight to the experts--the children themselves."

APA Home Page . Search . Site Map