Another acronym is working its way into the rheumatology office, but instead of representing just one more thing to which patients passively submit, PROMIS intends to make them active partners in both clinical assessment and treatment.
The Patient-Reported Outcomes Measurement Information System (PROMIS) was created by the National Institutes of Health in 2004 as way of integrating direct patient input into both clinical care and research. Now rheumatologists are validating PROMIS measures for use in rheumatic diseases for adults and children, and envision a time when the computerized health assessments will become a routine part of their care.
Cincinnati Children's Hospital Medical Center
Dr. Morgan DeWitt
"The insights we gain from PROMIS answers are often things that our standard patient interviews don’t elicit," said Dr. Morgan DeWitt, a pediatric rheumatologist at the Cincinnati Children’s Hospital Medical Center who’s validating some of the tool’s pediatric question banks. "It’s complementary to our history and physical – another way to get the information we need to better serve our patients."
PROMIS is a publicly available Web-based system that uses questions driven by computer adaptive technology to qualify patient descriptions of health status in a number of very specific physical and psychological domains, including several applicable to the rheumatologic illnesses: gastrointestinal health including symptoms, pain, fatigue, depression and anxiety, and physical function.
The banks are not disease-specific, but domain specific – a design that increases their clinical flexibility and carves out for them a space in research and clinical trials. In a paper published just last month describing PROMIS progress, Dr. DeWitt and her coauthors explained how important this is: "The domain-specific approach is based on the perspective that health attributes are not unique to a specific disease, although disorders may have characteristic profiles within domains. The creation of item banks that are not disease-specific permits the comparison of measurements across diseases. Such an approach allows an investigator to determine, for example, the impact of a new medication on fatigue for patients with chronic fatigue syndrome, multiple sclerosis, and cancer. Moreover, it allows for pragmatic research with patients with several diseases, measuring outcomes for domains regardless of specific disease contribution."
PROMIS leads patients through an adaptive response pattern, in which each question presented relies on the answer to the prior question. At the end of each series, the instrument provides a score, compared against normative U.S. population data.
PROMIS and similar outcome measures add an invaluable patient viewpoint to the usual history and physical exam that focuses on specific clinical characteristics, said Dr. Dinesh Khanna, director of the University of Michigan Scleroderma Program, Ann Arbor.
"Physicians tend to believe – whether rightly or wrongly – that our objective measurements are more appropriate and superior ways to measure patients’ disease severity response than the patient’s own subjective complaints. We may be interested in seeing changes in specific things, like joint swelling or tenderness, or an acute phase reactant. But the patient may be much more interested in getting pain and fatigue under control."
Tools like PROMIS encourage physicians to lock onto the problems that are really interfering with patients’ health-related quality of life at the time of each visit, Dr. Khanna said in an interview. "When the patient walks in, I can glance through the questions and their responses – especially the GI topics – and say ‘Okay, today your problem seems to be bloating and reflux, so let’s focus on that.’ I can get right to what is bothering the patient," rather than run through an entire exam or health assessment that might cover irrelevant items.
Unlike some other patient-reported assessments, which are static and need to be completed in their totality, such as the Health Assessment Questionnaire, PROMIS assessments can be tailored to hone in on issues that are specifically meaningful to a unique group of patients. Other assessments "ask a lot of general questions that might not be valid or pertain to that patient, or don’t provide you much insight into physical function, especially in a healthy individual," Dr. Khanna said. As an example, patients with scleroderma took just over a minute to complete each item bank providing information about their physical, mental, and social well-being.
Courtesy Dr. Dinesh Khanna
Dr. Dinesh Khanna
Unlike paper-and-pencil forms, PROMIS has the ability to be fully integrated into existing electronic health record systems. Computer technology teams at Dr. DeWitt’s institution created their own hybrid platform. But a leading EHR developer, Epic, has incorporated PRO libraries – including some of the PROMIS question banks – into its newest EHR software, she said. Physicians can also include their own patient-related outcomes measures if they desire.