Research
Print page Print page
Switch language
The Capital Region of Denmark - a part of Copenhagen University Hospital
Published

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

Research output: Contribution to journalReviewResearchpeer-review

Harvard

APA

Lopez-Olivo, M. A., Zogala, R. J., des Bordes, J., Zamora, N. V., Christensen, R., Rai, D., Goel, N., Carmona, L., Pratt, G., Strand, V., & 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 & Research, 73(5), 649-657. https://doi.org/10.1002/acr.24163

CBE

MLA

Vancouver

Author

Lopez-Olivo, Maria A ; Zogala, Richard J ; des Bordes, Jude ; Zamora, Natalia V ; Christensen, Robin ; Rai, Davesh ; Goel, Niti ; Carmona, Loreto ; Pratt, Gregory ; Strand, Vibeke ; Suarez-Almazor, Maria E. / Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide : An Outcome Measures in Rheumatology Systematic Review. In: Arthritis Care & Research. 2021 ; Vol. 73, No. 5. pp. 649-657.

Bibtex

@article{012d09e48f3241d2bfa52b7fd04035aa,
title = "Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide: An Outcome Measures in Rheumatology Systematic Review",
abstract = "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.",
keywords = "Arthritis, Rheumatoid/diagnosis, Functional Status, Health Status, Humans, Mental Health, Observational Studies as Topic, Patient Reported Outcome Measures, Patient-Centered Care, Quality of Life, Registries, Severity of Illness Index, Time Factors, Treatment Outcome",
author = "Lopez-Olivo, {Maria A} and Zogala, {Richard J} and {des Bordes}, Jude and Zamora, {Natalia V} and Robin Christensen and Davesh Rai and Niti Goel and Loreto Carmona and Gregory Pratt and Vibeke Strand and Suarez-Almazor, {Maria E}",
note = "{\textcopyright} 2020, American College of Rheumatology.",
year = "2021",
month = may,
doi = "10.1002/acr.24163",
language = "English",
volume = "73",
pages = "649--657",
journal = "Arthritis Care & Research",
issn = "2151-464X",
publisher = "JohnWiley & Sons, Inc",
number = "5",

}

RIS

TY - JOUR

T1 - Outcomes Reported in Prospective Long-Term Observational Studies and Registries of Patients With Rheumatoid Arthritis Worldwide

T2 - An Outcome Measures in Rheumatology Systematic Review

AU - Lopez-Olivo, Maria A

AU - Zogala, Richard J

AU - des Bordes, Jude

AU - Zamora, Natalia V

AU - Christensen, Robin

AU - Rai, Davesh

AU - Goel, Niti

AU - Carmona, Loreto

AU - Pratt, Gregory

AU - Strand, Vibeke

AU - Suarez-Almazor, Maria E

N1 - © 2020, American College of Rheumatology.

PY - 2021/5

Y1 - 2021/5

N2 - 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.

AB - 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.

KW - Arthritis, Rheumatoid/diagnosis

KW - Functional Status

KW - Health Status

KW - Humans

KW - Mental Health

KW - Observational Studies as Topic

KW - Patient Reported Outcome Measures

KW - Patient-Centered Care

KW - Quality of Life

KW - Registries

KW - Severity of Illness Index

KW - Time Factors

KW - Treatment Outcome

UR - http://www.scopus.com/inward/record.url?scp=85097083592&partnerID=8YFLogxK

U2 - 10.1002/acr.24163

DO - 10.1002/acr.24163

M3 - Review

C2 - 32004421

VL - 73

SP - 649

EP - 657

JO - Arthritis Care & Research

JF - Arthritis Care & Research

SN - 2151-464X

IS - 5

ER -

ID: 65749308