Background/Purpose:

There is a growing recognition of the potential value for measuring patient-reported outcomes (PROs) in patients with rheumatologic conditions. 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 is challenging because of technology and workflow barriers. Clinical disease activity measures are important for making treatment decisions in RA but do not measure patient domains of health important to patients. The Patient-Reported Outcomes Measurement Information System (PROMIS) measures patient status for different domains in people with a wide range of diseases and scores are standardized to the US general population.

We assessed the feasibility, patient/provider compliance and utility of electronically collecting PROs in patients in a large tertiary care rheumatology practice using PROMIS Global Health (GH), PHQ9, RAPID3 or SLAQ, the PROMIS domains: pain interference, fatigue and physical function, and a review of systems (ROS).

Methods:

PROs are administered on a tablet at the patient’s visit or through the patient portal (MyChart, Epic Systems) prior to their appointment through the Knowledge Program (Cleveland Clinic, Cleveland OH), an electronic platform that is integrated within the Epic electronic health record (EHR). PROMIS domains are administered using computer adaptive testing and scores are standardized on a T scale with a mean of 50 and SD of 10. Results are displayed within the EHR at the time of the visit. The ROS is administered at every visit. PHQ9, if normal, is administered yearly and the remaining scales are completed at least 3 months apart.

Results:

Since operational (8/2016–1/2018) MyRheum has administered 100,687 questionnaires in 29,238 patients at 53,608 visits (~30% using MyChart). More than 40,000 PROMIS GH and 50,000 RAPID3 scales have been collected. PROMIS GH physical and mental health summary scores were compared across 10 Cleveland Clinic disease areas (n=276,182). Mean PROMIS physical health summary score of rheumatology patients was 42.5, worse than all disease areas (mean score range 41.1 – 49.2) except neurology. Mean mental health summary scores of rheumatology patients was 47.4, which fell in the middle of the range of mean scores of the disease areas (39.6 to 50.3). Patient completion rates averaged 71% for 2017 with a small gradual decline over time. Nearly 1/3 were collected at home prior to the visit using My Chart.

Conclusion:

The MyRheum system was successfully deployed in a tertiary care system with 27 rheumatologists in 10 locations. Cross departmental comparisons of diseases showed rheumatology patients had the second lowest self-reported physical health demonstrating the impact of our diseases and the need to measure PROs that assess this domain. The decline in participation requires further analysis. The creation of this large PRO biomarker databank demonstrates its practicality and provides a powerful platform for clinical care, research and value-based healthcare initiatives.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-and-implementation-of-a-patient-reported-outcomes-measurement-information-system-myrheum/