Finding quality of life amidst quantity of data
For Dr. Michael Brundage, “quality of life” is one of those tantalizing medical concepts that is easy to grasp but very difficult to pin down. Nevertheless, he has spent much of the last 30 years with the Canadian Cancer Trials Group attempting to do just that, seeking better ways to measure and communicate this elusive aspect of a patient’s well-being.
“Quality of life is something we measure in clinical trials to see how people actually feel as opposed to what their chest X-ray or their CAT scan shows,” he explains. “Our committee is responsible for the methods that are used in those studies.”
In addition to serving as director of the Division of Cancer Care and Epidemiology for the Queen’s Cancer Research Institute, Brundage co-chairs a standing committee that provides clinical trial investigators with expertise and guidance on assessing the quality of life of participating patients. He is forthright about the challenge posed by this process, which asks doctors and patients to consider numbers that neither of them may be able to place in a familiar context.
That process begins with a seemingly simple survey of questions, such as whether a patient can carry a bag of groceries or interact with friends. Through a complex scoring algorithm developed by administering this questionnaire to thousands of people, an individual’s responses are ranked between 0 and 100.
Quality of life is something we measure in clinical trials to see how people actually feel as opposed to what their chest X-ray or their CAT scan shows. Our committee is responsible for the methods that are used in those studies.
“My job is to figure out how to translate this knowledge from clinical trials into practice,” says Brundage, who points out that most physicians would have trouble figuring out why a patient who received a new drug had a quality of life measure of 85 while one who did not receive the drug scored only 80.
How is quality of life determined?
A number of approaches are available to assess quality of life, including the RAND Health Medical Outcomes Study (MOS), which asks questions such as:
- Has your health limited you in your ability to eat, dress, bathe, or use the toilet?
- Does your health keep you from working at a job, doing work around the house or going to school?
- During the past month, how much of the time have you felt calm and peaceful? Downhearted and blue?
The Functional Assessment of Cancer Therapy requests self-assessments of:
- physical well-being (e.g. I have a lack of energy)
- social/family well-being (e.g. I feel close to my partner)
- emotional well-being (e.g. I worry about dying)
- functional well-being (e.g. I am sleeping well)
Nevertheless, he regards it as crucial to ensure that this information ranks with the “hard” data generated by the trial, such as the traditional physical measures of a patient’s health. According to Brundage, quality of life can serve as an effective tool for assessing difficult trade-offs in cancer care, including whether to administer an agent that is essentially toxic to most patients but can reap huge rewards for some of them. While the limited prospect of those rewards might initially appear to be outweighed by the suffering of so many people, a formal trial comparing the quality of life for those who did and did not undergo that treatment can help clarify the short-term and long-term balance between potential gains and unpleasant side effects.
“We can tell from those data that there are short-term consequences but in the fullness of time people look the same from a quality of life perspective, whether or not they got the drug,” he concludes. They recovered, in other words, from the unpleasant side effects.
Brundage sees these insights as critical to making the most of cancer therapies, many of which are fraught with these kinds of trade-offs. And however comfortable he has become with the numbers that are assigned to quality of life, he remains sympathetic to medical practitioners who have been trained to regard this notion in more general, subjective terms.
By way of analogy, he points to bone density scans that, when first introduced, were new to most physicians, so they had trouble attaching the numbers to a specific state of patient health. Eventually, however, physicians became familiar with integrating these measurements and could easily determine which readings represented mild as opposed to more serious problems.
Brundage hopes that quality of life measures will become just as familiar, and that by taking stock of factors, such as patient fatigue, additional meaning will be brought to decisions about patients, and yield more effective treatment.
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Sinclair Cancer Research Institute
The Sinclair Cancer Research Institute (SCRI) is driving global efforts to combat cancer through cutting-edge research, innovative facilities, clinical trials, and a program to train the next generation of cancer researchers.
Discovery: They explore new drugs and therapies, using basic science and advanced imaging to understand the body’s response to treatments.
Trials: Potential treatments are rigorously tested to establish new standards of care for specific cancers.