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Measuring What Matters to Patients

One size does not, in fact, fit all.

Key points

  • What matters for quality of life is highly personal.
  • Questionnaires for pain, depression, and other symptoms can be tailored to these personal values
  • When the patient has a role in choosing the questions, they are more reflective of their lived health experience.

A large portion of medicine, including mental health care and medical research, is centered on asking patients about their symptoms. These symptoms can include pain, depressed mood, anxiety, and anything else a patient can experience. The best way to assess these symptoms is to ask patients, obviously. However, how we ask patients and what we ask them can make a huge difference.

A little background might be helpful here. First, these questionnaires go by many names, including patient-reported outcomes, self-reported questionnaires, surveys, instruments, scales, and measures. They use similar formats where patients are asked a series of questions and given a predetermined set of choices for their response. For example, a question might ask, “How much pain are you in right now on a 0 to 10 scale?” where the numbers from 0 to 10 are the response options. Second, the questions are usually chosen by a doctor, mental health care provider, scientist, or even a computer, so the exact questions asked are predetermined. These questionnaires are useful for comparing treatments in clinical trials and seeing if a patient is improving.

A new method for measuring patients' symptoms

You might notice that there is very little in that description of what matters to each individual patient. I noticed that, too. So I created a new way of asking about symptoms. Instead of having myself or another health care provider or scientist choose the questions, I created a way for patients to choose the questions most meaningful to themselves and tested it in a recent study in the Journal of Pain and Symptom Management. We presented people experiencing pain with a series of 35 questions that measure how pain interferes with their lives. We then asked the participants to choose the four questions that are most important for their quality of life.

Source: Tumisu/Pixabay

The study results supported the idea that one size does not fit all. Out of 35 questions, only one was chosen by a majority of participants, and even then, it was just over 50 percent. Participants varied widely in what was important for their quality of life. Some were concerned about pain interfering with thinking skills; others were more concerned about pain stopping their social activities. Other participants were concerned about whether they could work (including around the house) with pain. We used a modern statistical method to score the questions so that even if people answered different questions, the scores would still be comparable in research studies.

Most importantly, we found that patients preferred this tailored pain measure to standard pain measures that give everyone the same set of questions. While this study examined pain, the principle could still apply to other symptoms. The experiences of depression and anxiety are very individual. What questions are best for one person might not work for another.

Anxiety is a prime example. Some people respond to anxiety by reassurance seeking, constantly checking to see if everything is fine. Others respond by entirely avoiding anything that provokes anxiety. The same method we used in pain could be used for anxiety and depression to measure what matters to each individual patient rather than making assumptions about what is important.

Now, this is one study, and further studies are needed to make sure this method works for other patients and other symptoms. However, it shows proof-of-concept that patients can show what is meaningful to them personally. All those questionnaires we complete at doctors’ offices could be a lot more meaningful if we tailored them to each patient’s values.