Epic’s new system allows patients to access a patient portal section of the EHR in which they can complete their health surveys before an appointment; they can also access "events," which are upcoming surgeries, appointments, or time-bound clinical goals. The system sends patients e-mail reminders to complete their tasks.
The more targeted approach of PROMIS and other patient reported outcome measures translates into a more efficient visit, Dr. DeWitt said in an interview. "You are really limited in your time with each patient. There are only so many things you can ask. Patient report tools can pick up on things that a typical exam, even lab reports, might not reveal. Sometimes labs can come back normal, for instance, when a patient feels really ill."
PROMIS is just one of these types of tools. In fact, Dr. Khanna is the creator of another, the UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract Instrument (GIT).
The GIT assesses how a patient’s gastrointestinal health affects functional, psychological, and social well-being. But unlike the GIT and other disease-specific outcome measures, PROMIS offers a large menu of question banks that interrogate a wealth of health issues. Each bank is separately and freely available, allowing clinicians to pick and choose the topics most relevant to their patients. Each bank can be used in its entirety, or in a short form. The pediatric banks are designed for children to self-assess, but there are also a number designed for adult proxies to complete. Most are also available as PDFs that can be used for paper/pencil data collection.
In addition to PROMIS, Dr. DeWitt uses a variety of health assessments, including the Childhood Health Assessment Questionnaire. But in general, those are most useful when patients have serious disabilities. "They pick those problems up well, but as function improves, it becomes harder to differentiate and to track subtle change."
PROMIS offers an improvement in that area, she believes. "I always use the review of systems with patients to identify health concerns. But patients also have problems and limitations that don’t routinely get asked about, and they can be surprising. Without a survey with meaningful items they can report on, you might not get all the information."
Also, she added, "Patient-reported outcomes are a quantifiable way of assessing health outcomes and tracing a patient’s progress over time."
Pain interference is a good example, she said. "You can get the patient to give you a pain intensity score of 0-10, but you don’t see what the impact of that is on their day-to-day functioning."
Ongoing validation studies continue to support and refine the PROMIS measures, Dr. Khanna said. Although PROMIS can be integrated into clinical practice, clinicians need to be able to translate the results into real life decision making. Just how that can be done isn’t yet completely clear.
"The question really is how do you interpret the results and then what do you do about it? This is a problem with any patient-reported outcome measure early in its development," he said. "If I take your blood pressure and it’s 150/90, I see this as an abnormal sign, and I know how to interpret it and what to do. But if you complete a patient report and your score is 40, compared with the normative score of 50 for the U.S. population norm, what does that mean? I know it’s bad, but how bad is it? When do I take action? I have no metric in my mind that corresponds to it."
Validation studies continue to address this, he said. He and his team will soon present their initial interpretation schema for four rheumatology-related question banks at the upcoming annual meeting of the American College of Rheumatology.
Rheumatologist focus groups at the University of Michigan reviewed a series of PROMIS reports completed by rheumatology patients, assessing physical function, pain intensity, fatigue, and depression. Based on the groups’ input, Dr. Khanna and his team adapted the PROMIS heat map, which has a unique, color-coded pictorial representation of how the scores could interact with clinical decision making.
Instead of just looking at raw scores, the group endorsed a "thermal map" in which the population norm is in the center, colored light green. As percentiles decrease, indicating better scores, the colors fade down through blue to dark purple. Increasing percentiles, indicating worsening scores, corresponded to ever-warmer colors, from yellow to orange to red.
A key point of the map is the baseline comparison, which doesn’t use the U.S. norm as the comparator, Dr. Khanna said. "We already know our patients are doing worse than the average person, so why do we want to compare them that way? We want to know how the patient compares with other patients with the same issues for clinical decision making and provide a reference point for discussion with the patient."