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Measuring Patients' Experience: Toshi A. Furukawa, MD, PhD, discusses measuring patients' experience.
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Measuring Patients' Experience: Toshi A. Furukawa, MD, PhD, discusses measuring patients' experience.
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Language: EN.
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>> I'm Joan Stephenson, editor of JAMA's "Medical News and Perspectives" section. Today I have the pleasure of speaking with Toshi Furukawa about measuring patients' experiences, a topic covered in Chapter 10.5 of "User's Guide to the Medical Literature." This chapter, co-authored by Dr. Furukawa, discusses patients' experiences in health-related quality of life. Dr. Furukawa, why don't you introduce yourself to our listeners? >> My name is Toshi Furukawa, professor and Chair of the Department of Health Promotion and Human Behavior at Kyoto University, Japan.
My background is psychiatry, but I am currently devoting most of my time to research and education in behavioral medicine and clinical epidemiology at Kyoto University School of Public Health. >> Dr. Furukawa, why is it important for clinicians to measure patients' experiences and how they are feeling? >> Basically, I think patients receive medical treatments to live longer and/or to feel better, or to do so in the future. When the treatment was very effective in the first domain or even drastic in the second domain, perhaps we would not have needed to be interested in measuring patients' experiences as much.
However, such days of acute illnesses is long gone. And the growing prevalence of chronic disease has led clinicians to recognize the importance of direct measurement of how people are feeling and how people are functioning. >> Can you provide some examples of instruments and tests that measure patients' experiences? >> Instruments to measure patients' experiences are variably called "scales," "tests," "measures," "indexes," "assessments," or "instruments," among others.
But these can be categorized according to their purpose and their format. There are basically, I think, three or four purposes to those instruments. One is screening, two is diagnostic, and three is measuring either severity or change in severity. And the format can be distinguished into three. One is self-report, and clinician rated. And the third is physiologic. So in measuring patients' experiences, we are interested in either self-report or clinician-rated severity measures or change measures.
And some of the examples of severity measures in self-report format include many of the so-called health-related quality-of-life measures such as Short Form 36 or mainly known as "SF-36." Or perhaps another very - extense [phonetic] example is New York Heart Association Functional Classification of Heart Failure. >> What are some of the guidelines for using articles about health-related quality of life?
>> There are three primary guides to see if the instruments are valid. One is to ask. Have the investigators measure aspects of patients' lives that patients consider important. Two is, is the instrument reliable when measuring severity, or responsive when measuring change? And three is, does the instrument relate to other measures in the way predicted? >> How can clinicians be sure that a study measures aspects of life that their patients value?
>> That's not always very straightforward. But first I think you have to see the contents of the measures yourself. You can then use your own experiences to decide whether what is being measured is important to your own patients. And oftentimes you may also have to ask your patients directly. A good question to ask -- or maybe you can ask that in your own mind -- is to ask if the endpoints measured in the measurements were the only things that changed, would the patients be willing to take the treatments?
Another interesting example that I will always cite is the American College of Rheumatology's so-called core set of disease activity measures of rheumatoid arthritis. When they set these core set of disease activity measures, three of which we presented, patient's own reports of pain, global disease activity, and physical function. Despite the extensive and intensive development process of these seven core items, the data set, when presented to patients, failed to include one important aspect of the disease activity -- namely fatigue.
So you always have to ask your patients. >> That certainly makes sense. When would a clinician use an instrument that measures severity? And when would a clinician use an instrument that measures change? >> There are two distinct ways in which clinicians would like to use these instruments. First is to distinguish between people who have a better or worse state. And second is to measure whether patients are feeling better or worse over time. So for the first purpose, you'll use instruments that are so-called "severity measures." And for the second purpose, you use the so-called "change measures." Clinicians are usually not as accustomed to make these distinctions because many of the physiological measures serve these two purposes.
For example, blood pressure You use blood pressure to distinguish high, appropriate, and low blood pressure. And also you measure blood pressure to see if the patients are responding to the treatments. But especially with scales that are related to how patients are feeling, you have to be aware of these distinctions in the purposes that each scale is supposed to serve. For example, New York Heart Association functional classification has only four levels. But these can be very important when you decide whether a treatment is warranted in this patient or not.
However, when you want to measure when this treatment is doing some good to the patient, only four levels may not be enough to see small but important change in the patient's status. >> What are the different approaches to establishing interpretability of health-related quality-of-life measures? >> Interpretability is very important when you consider if you want to use this measure over the other measure. Some measures of patients' experiences give out numbers, like 12 on this scale and 10.3 on that scale or even 0.65 on the other scale.
They are just about uninterpretable, not only to you but also to your patients. So you have to make those measures interpretable. And there are basically two ways to make scales interpretable. One is the so-called "anchor-based approach" and the other is so-called "distribution-based approach." In the first, anchor-based approach, you relate one instrument -- health-related quality of instrument that you are interested in -- against another instrument whose meaning is self evident like very much better; much better; a little better; no change; worse; very much worse.
And when you relate these two scales, you can see what scores on the first scale could mean "very much worse" and what scores in the first scale could mean "better" and what scores on the first scale would mean "very much better." And the second approach, which is called distribution-based approach, that is more statistical. And you usually relate in what point on the distribution of the scale scores the patient is located. There is much debate how far a patient must be in order to be rated "a little better" or "better" or "much better" on that distribution.
So there is not yet a strong consensus how to interpret distribution-based approach to interpretability. >> Is there anything else you would like to tell our readers about measuring patients' experiences? >> Yes. When trying to interpret HRQL results, we must consider that depending on the patient, a different value will be placed on the same change in functional capacity. The result is a series of tradeoffs, often assessed informally in the interaction between physicians and patients. For example, one patient may be desperate for small improvements in a particular domain of his or her health-related quality of life and will be willing to take drugs with severe adverse effects to achieve that improvement.
Another patient, by contrast, may be indifferent to small improvements and unwilling to tolerate even mild toxicity. Eliciting these preferences is an integral part of practicing evidence-based medicine. >> Thank you, Dr. Furukawa, for this overview of measuring patients' experiences and health-related quality of life. For additional information about this topic, JAMA "Evidence" subscribers can consult Section 10.5 in "User's Guides to the Medical Literature." This has been Joan Stephenson of JAMA talking with Dr. Toshi Furukawa for JAMA "Evidence."
