MyRheum: New Revelations on Patient-Reported Outcomes

There is growing recognition of the value of measuring patient-reported outcomes (PROs) in patients with rheumatologic conditions. Clinical disease activity measures are important for making treatment decisions but sometimes do not measure the domains of health important to patients. PROs measured at point of care can enhance shared decision-making and facilitate treatment decisions, although the ability to collect and report PROs in real time can be challenging because of technology and workflow barriers.

Through support from Cleveland Clinic and an information technology team, the Department of Rheumatic and Immunologic Diseases developed a patient-entered data (PED) system using validated measurements that assess physical and mental function, social health and well-being, and disease activity, as well as a rheumatology-oriented review of systems. This PED system, called MyRheum, allows the clinician to evaluate patient-reported health measures at point of care, engage patients in their care and make better treatment decisions based on patient-centric data.

At the 2018 American College of Rheumatology’s Annual Meeting, several staff members presented compelling data on their recent experience with MyRheum.

Evaluating PROs in immune-mediated diseases

In “Using Patient Reported Outcomes at Point of Care in Immune Mediated Diseases: Minimal Clinically Important Differences,” authors M. Elaine Husni, MD, MPH; Chad Deal, MD; Abby Abelson, MD; Leonard Calabrese, DO; database designer Greg Strnad; and biostatistician James Bena shared how MyRheum helped evaluate PROs in several immune-mediated diseases.

Minimal clinically important differences (MCID) are patient-derived scores that reflect changes in clinical care that are meaningful to the patient. Little is known about MCID in many immune-mediated diseases, as small differences in PROs may be statistically significant yet clinically unimportant for the patient.

Using MyRheum, data was collected from patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA), lupus and granulomatosis with polyangiitis (GPA) who had completed PROMIS GH and RAPID3 at two separate visits, six months apart. Paired t-tests assessed the changes between visits. Important differences were identified by a PROMIS MCID change of 5 and RAPID3-weighted score of 1.2 (improvement or worsening).

The authors found:

• The change in PROMIS score was statistically significant overall (P < 0.001) as well as for those with either GPA (P = 0.030) or RA (P < 0.001), but not for lupus (P = 0.67) or PsA (P = 0.36).
• The change in RAPID3 score was significant overall (P < 0.001), as was the change for lupus (P = 0.048) and RA (P < 0.001), but not for GPA (P = 0.11) or PsA (P = 0.17).
• Thresholds for clinically meaningful change in PROMIS GH were most significant in GPA and RA compared to PsA and lupus, and in RAPID3 were most significant in lupus and RA compared to PsA and GPA.
• Approximately 15-20 percent of patients showed an improvement or worsening of MCID by six months; 60-70 percent had no change between visits.

On average, there was improvement in PROMIS and RAPID3 scores among all immune-mediated diseases after two visits. However, this study indicates that it is unlikely to have a single MCID value applicable across all chronic diseases.

The variability in MCID implies that some patients improve while others worsen. This study presents an opportunity to better understand patient characteristics and therapies that may explain these changes.