A New Way to Measure What Actually Matters to Patients

One of the key differences between cognitive behavioral therapy and many other forms of therapy is something called "measurement-based care." Measurement-based care is when a patient completes questionnaires about their symptoms either every visit or therapy session or regularly throughout treatment. The therapist or physician then compares the answers and scores from the questionnaires to when the patient first started treatment to see if the treatment worked. If depression, anxiety, pain, or other symptoms decreased, the treatment would likely continue. If not, treatment would change. While measurement-based care is not exclusive to cognitive behavioral therapy, cognitive behavioral therapists are more likely to use it.

One key problem with these questionnaires is, well, the questions. The questions are often standardized, assuming the same symptoms matter equally to all patients, but they do not reflect what is most meaningful or important to the individual patient. For example, a depressed mood may be the most troubling symptom to one patient but insomnia is the most important to another. My colleagues and I have developed a new way of making these questionnaires more tailored to each individual patient’s values, a technique we call Precision Patient-Reported Outcomes (PROs). We recently published the results of a pilot study using this method in the Journal of Pain and Symptom Management.

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The Precision PRO technique asks patients to review a list of questions used to measure symptoms. For our pilot study, we used pain in people with cancer. Patients are then asked to select the group of questions that matter most to them and they answer those questions instead of questions chosen by the healthcare provider or researcher. Each patient can pick what matters most to their own quality of life. For example, one person may choose questions about pain and the ability to work while another person could choose questions about pain and the ability to socialize. We then use sophisticated statistical techniques to score the responses to the questions and interpret the scores.

In our pilot study, we found all participants were able to select four questions most important to them for pain measurement. We also found that the majority preferred choosing their own questions or building their own personalized questionnaire rather than using standard, one-size-fits-all questionnaires. Most interesting, out of 35 questions assessing pain, no one question was meaningful for a majority of participants. Participants had very different ideas about what mattered to them personally when measuring their pain.

While this example is for pain, our Precision PRO technique can be used for mental health questionnaires. Instead of everyone answering the same five to ten questions about depression, each patient could pick which questions matter the most to them and then use those questions to monitor whether treatment is working or not. The whole point of measurement-based care is to make it patient-centered. But using one-size-fits-all questionnaires doesn’t help. Thanks to research advances, we may have options to make these questionnaires even more patient-centered.