Session Type: ACR Poster Session C
Session Time: 9:00AM-11:00AM
International registries and cohorts could potentially provide long-term data on patient-centered outcomes. In recent years there has been a concerted effort to define a core set of outcome measures in rheumatoid arthritis (RA) patient registries to reduce the heterogeneity and enhance analysis of data.
We conducted an environmental scan in 2016 to identify registries and cohorts (Google, PubMed, patientregistry.ahrq.gov, and clinicaltrials.gov) collecting data on patients with RA. We updated this previous study focusing on patient-reported outcome measures (PROMs). This study will aid in determining the degree of heterogeneity of PROMs worldwide to aid in a systematic effort to define a core set of outcome measures that are truly critical to patients and would probably not be collected in a randomized trial.
An expert librarian searched Medline and Embase using registries from our previous environmental scan. The name/acronym of each registry or cohort was cross referenced with terms or acronyms to select for RA. We included active registries or cohorts with articles published in the last five years. Two independent reviewers collected data and discrepancies were resolved by consensus or adjudication. Data was summarized using descriptive statistics.
We included 131 registries and cohorts . Registries/cohorts were identified in 46 countries. The majority of these were from Europe ( 76 [58%]) and the rest from North America (24 [18%]), South America (9 [7%]), and Asia/Oceania (22 [17%]). PROMs measuring a functional impairment domain was frequently measured by the health assessment questionnaire, (HAQ)-HAQ-DI (77 [59%]), MDHAQ (13 [10%]), HAQ-II (5 [4%]), and visual analogue scale function (12 [10%]). Individual PRO domains included pain (44 [34%]), fatigue (16 [12%]), sleep (6 [5%]), quality of life, work productivity and patient-reported disease activity. Quality of life was measured with the medical outcomes Study Short Form with 6 items (2 [2%]), Rheumatoid Arthritis Qol (2 [2%]), Short Form-36 (23 [18%]), and different versions of EuroQoL (EQ) such as EQ-VAS (4 [3%]) and EQ-5D (20 [15%]). Working capacity was measured by the Work Productivity and Activity Impairment Questionnaire in 4 (3%) of the registries and cohorts. Patient-reported disease activity measures included the patient global assessment (49 [37%]), Rheumatoid Arthritis Disease Activity Index (9 [7%]), Rheumatoid Arthritis Impact of Disease (4 [3%]), and the Routine Assessment of Patient Index Data (6 [4%]).
Functional impairment was the most frequently recorded patient-reported outcome. As expected this study reveals a significant heterogeneity and infrequent use of the same PROMs. These data suggests far more effort must be made to include and define a core set of critical outcomes in longitudinal observational studies – outcomes that are critical to patients, and would not be feasible in a randomized trial.
To cite this abstract in AMA style:Zogala R, Criner K, Lopez-Olivo MA, Zamora N, Rai D, Pratt G, des Bordes JKA, Christensen R, Suarez-Almazor M. Patient-Reported Outcome Measures Used in Rheumatoid Arthritis Cohorts and Registries Around the World: An Environmental Scan from the Outcome Measures in Rheumatology Critical Outcomes in Longitudinal Observational Studies Working Group [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 10). https://acrabstracts.org/abstract/patient-reported-outcome-measures-used-in-rheumatoid-arthritis-cohorts-and-registries-around-the-world-an-environmental-scan-from-the-outcome-measures-in-rheumatology-critical-outcomes-in-longitudina/. Accessed January 20, 2020.
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