ACR Meeting Abstracts

ACR Meeting Abstracts

Abstract Number: 2480

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

Richard Zogala1, Karla Criner2, Maria A. Lopez-Olivo1, Natalia Zamora3, Devesh Rai1, Gregory Pratt4, Jude K. A. des Bordes1, Robin Christensen5 and Maria Suarez-Almazor1, 1Section of Rheumatology and Clinical Immunology, Department of General Internal Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, 2Internal Medicine, Baylor College of Medicine, Houston, TX, 3Reumatologia, Instituto de Rehabilitación Psicofísica, Buenos Aires, Argentina, Buenos Aires, Argentina, 4Research Medical Library, The University of Texas MD Anderson Cancer Center, Houston, TX, USA, Houston, TX, 5Department of Rheumatology, Musculoskeletal Statistics Unit: The Parker Institute, Bispebjerg and Frederiksberg Hospital, & Department of Rheumatology, Odense University Hospital, Copenhagen, Denmark

Meeting: 2018 ACR/ARHP Annual Meeting

Keywords: , , ,

Session Information

Date: Tuesday, October 23, 2018

Session Title: Rheumatoid Arthritis – Diagnosis, Manifestations, and Outcomes Poster III: Complications of Therapy, Outcomes, and Measures

Session Type: ACR Poster Session C

Session Time: 9:00AM-11:00AM

Background/Purpose:

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.

Methods:

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.

Results:

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%]).

Conclusion:

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.

Disclosure: R. Zogala, None; K. Criner, None; M. A. Lopez-Olivo, None; N. Zamora, None; D. Rai, None; G. Pratt, None; J. K. A. des Bordes, None; R. Christensen, None; M. Suarez-Almazor, None.

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 9). 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 March 28, 2023.

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