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Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review.

Publication ,  Journal Article
Lopez-Olivo, MA; Zogala, RJ; des Bordes, J; Zamora, NV; Christensen, R; Rai, D; Goel, N; Carmona, L; Pratt, G; Strand, V; Suarez-Almazor, ME
Published in: Arthritis Care Res (Hoboken)
May 2021

OBJECTIVE: Prospective long-term observational studies (LOS) in rheumatoid arthritis (RA) lack a core set of universally collected outcome measures, particularly patient-centered outcomes, precluding accurate comparisons across studies. Our aim was to identify long-term outcome measures collected and reported in these studies. METHODS: We conducted a systematic review of registries and LOS of patients with RA, searching in ClinicalTrials.gov, the Agency for Healthcare Research and Quality Registry of Patient Registries, and Google Scholar. The names and acronyms of registries and LOS were further searched in the Medline and Embase databases to retrieve published articles. Two independent reviewers undertook data collection, quality appraisal, and data extraction. RESULTS: We identified 88 registries/LOS that met our eligibility criteria. These were divided into 2 groups: disease-based (52 [59%]) and therapy-based (36 [41%]). Methodologic and reporting standards varied across the eligible studies. For clinical outcomes, disease activity was recorded in 88 (100%) of all LOS/registries. The most commonly reported measure (86 [98%]) was the composite outcome Disease Activity Score using 28 joints. Of the patient-centered outcomes collected, physical functioning was most frequently reported (75 [85%]) with the Health Assessment Questionnaire (75 [85%]) as the most commonly used instrument within this domain. Other domains of patient-centered outcomes were comparatively infrequently recorded: mental (29 [33%]), social (20 [23%]), and health-related quality of life (37 [42%]). CONCLUSION: Most registries/LOS collect measures of disease activity and physical function. However, there is substantial heterogeneity in the collection of relevant patient-centered outcomes that measure symptom burden and mental and social ramifications of RA.

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Published In

Arthritis Care Res (Hoboken)

DOI

EISSN

2151-4658

Publication Date

May 2021

Volume

73

Issue

5

Start / End Page

649 / 657

Location

United States

Related Subject Headings

  • Treatment Outcome
  • Time Factors
  • Severity of Illness Index
  • Registries
  • Quality of Life
  • Patient-Centered Care
  • Patient Reported Outcome Measures
  • Observational Studies as Topic
  • Mental Health
  • Humans
 

Citation

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Lopez-Olivo, M. A., Zogala, R. J., des Bordes, J., Zamora, N. V., Christensen, R., Rai, D., … Suarez-Almazor, M. E. (2021). Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review. Arthritis Care Res (Hoboken), 73(5), 649–657. https://doi.org/10.1002/acr.24163
Lopez-Olivo, Maria A., Richard J. Zogala, Jude des Bordes, Natalia V. Zamora, Robin Christensen, Davesh Rai, Niti Goel, et al. “Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review.Arthritis Care Res (Hoboken) 73, no. 5 (May 2021): 649–57. https://doi.org/10.1002/acr.24163.
Lopez-Olivo MA, Zogala RJ, des Bordes J, Zamora NV, Christensen R, Rai D, et al. Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review. Arthritis Care Res (Hoboken). 2021 May;73(5):649–57.
Lopez-Olivo, Maria A., et al. “Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review.Arthritis Care Res (Hoboken), vol. 73, no. 5, May 2021, pp. 649–57. Pubmed, doi:10.1002/acr.24163.
Lopez-Olivo MA, Zogala RJ, des Bordes J, Zamora NV, Christensen R, Rai D, Goel N, Carmona L, Pratt G, Strand V, Suarez-Almazor ME. Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review. Arthritis Care Res (Hoboken). 2021 May;73(5):649–657.
Journal cover image

Published In

Arthritis Care Res (Hoboken)

DOI

EISSN

2151-4658

Publication Date

May 2021

Volume

73

Issue

5

Start / End Page

649 / 657

Location

United States

Related Subject Headings

  • Treatment Outcome
  • Time Factors
  • Severity of Illness Index
  • Registries
  • Quality of Life
  • Patient-Centered Care
  • Patient Reported Outcome Measures
  • Observational Studies as Topic
  • Mental Health
  • Humans