Development of the HIV360 international core set of outcome measures for adults living with HIV: A consensus process

HIV Medicine ◽  
2021 ◽  
Author(s):  
João Marques‐Gomes ◽  
Matthew J. Salt ◽  
Rita Pereira‐Neto ◽  
Franca S. Barteldes ◽  
Vera Gouveia‐Barros ◽  
...  
2018 ◽  
Vol 42 (3) ◽  
pp. 174-220 ◽  
Author(s):  
Jennifer L. Moore ◽  
Kirsten Potter ◽  
Kathleen Blankshain ◽  
Sandra L. Kaplan ◽  
Linda C. OʼDwyer ◽  
...  
Keyword(s):  

2019 ◽  
Vol 46 (9) ◽  
pp. 1198-1201 ◽  
Author(s):  
Sibel Z. Aydin ◽  
Joanna C. Robson ◽  
Antoine G. Sreih ◽  
Catherine Hill ◽  
Fatma Alibaz-Oner ◽  
...  

Objective.The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group seeks to develop validated outcome measures for use in trials for large-vessel vasculitis (LVV).Methods.An international Delphi exercise conducted among investigators identified items considered important to measure active disease. In parallel, qualitative research with patients was conducted, including interviews and focus groups.Results.Next steps prioritized by the group for LVV include (1) defining disease states (remission, flare, and patient-acceptable symptom state) and (2) selection of patient-reported outcome tools.Conclusion.The ultimate goal is to develop an OMERACT-endorsed core set of outcome measures for use in clinical trials of LVV.


2020 ◽  
Vol 4 (4) ◽  
pp. 652-658
Author(s):  
Saunya Dover ◽  
Victor S. Blanchette ◽  
Alok Srivastava ◽  
Kathelijn Fischer ◽  
Audrey Abad ◽  
...  

2019 ◽  
Vol 28 (11) ◽  
pp. 2061-2071 ◽  
Author(s):  
Laurent Audigé ◽  
Hans-Kaspar Schwyzer ◽  
Holger Durchholz ◽  
Ville Äärimaa ◽  
Tjarco D. Alta ◽  
...  

2009 ◽  
Vol 69 (01) ◽  
pp. 102-107 ◽  
Author(s):  
A Boonen ◽  
J Braun ◽  
I E van der Horst Bruinsma ◽  
F Huang ◽  
W Maksymowych ◽  
...  

Objective:To report on the results of a standardised consensus process agreeing on concepts typical and/or relevant when classifying functioning and health in patients with ankylosing spondylitis (AS) based on the International Classification of Functioning and Health (ICF).Methods:Experts in AS from different professional and geographical backgrounds attended a consensus conference and were divided into three working groups. Rheumatologists were selected from members of the Assessment of SpondyloArthritis international Society (ASAS). Other health professionals were recommended by ASAS members. The aim was to compose three working groups with five to seven participants to allow everybody’s contribution in the discussions. Experts selected ICF categories that were considered typical and/or relevant for AS during a standardised consensus process by integrating evidence from preceding studies in alternating working group and plenary discussions. A Comprehensive ICF Core Set was selected for the comprehensive classification of functioning and a Brief ICF Core Set for application in trials.Results:The conference was attended by 19 experts from 12 countries. Eighty categories were included in the Comprehensive Core Set, which included 23 Body functions, 19 Body structures, 24 Activities and participation and 14 Environmental factors. Nineteen categories were selected for the Brief Core Set, which included 6 Body functions, 4 Body structures, 7 Activities and participation and 2 Environmental factors.Conclusion:The Comprehensive and Brief ICF Core Sets for AS are now available and aim to represent the external reference to define consequences of AS on functioning.


2017 ◽  
Vol 44 (11) ◽  
pp. 1750-1753 ◽  
Author(s):  
Gulen Hatemi ◽  
Alexa Meara ◽  
Yesim Ozguler ◽  
Haner Direskeneli ◽  
Alfred Mahr ◽  
...  

Objective.The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group has been working toward developing a data-driven core set of outcome measures for use in clinical trials of Behçet’s syndrome [Behçet disease (BD)]. This paper summarizes the group’s work through OMERACT 2016, discussions during the meeting, and the future research agenda.Methods.Qualitative patient interviews were conducted among 20 patients with BD who have different types of organ involvement. A 3-round Delphi among BD experts and patients was initiated to identify domains, subdomains, and outcomes to be assessed in clinical trials of BD. The results of these studies were discussed during OMERACT 2016 and next steps were planned.Results.Patients’ perspectives and priorities were identified through qualitative interviews that identified candidate domains and subdomains for inclusion in the Delphi and characterized some shortcomings of the currently used patient-reported outcomes in BD. The first round of the Delphi was completed and several domains or subdomains were endorsed by the experts and/or the patients. Because many more items were endorsed than would be feasible to assess during a clinical trial, rating and ranking of items by physicians and patients was planned as a next critical step. The challenges of assessing specific organ system involvement was also discussed.Conclusion.The OMERACT Behçet Syndrome Working Group research program will identify core domains for assessment in BD with the goal of developing a core set of outcome measures for use in all trials of BD with the option to incorporate additional outcomes for specific organ involvement.


2013 ◽  
Vol 38 (8) ◽  
pp. 822-838 ◽  
Author(s):  
M. Marks ◽  
J. W. Schoones ◽  
C. Kolling ◽  
D. B. Herren ◽  
J. Goldhahn ◽  
...  

The objective was to identify all outcome measures used in studies on trapeziometacarpal osteoarthritis (TMC OA) and evaluate their measurement properties. In a two-step systematic literature review, we first identified studies including TMC OA patients and extracted all outcome measures. They were categorized according to the Outcome Measures in Rheumatology (OMERACT) core set for OA including five dimensions: pain, physical function, global assessment, imaging, and quality of life (QoL). Secondly, we retrieved articles on the measurement properties of the identified outcome measures for TMC OA patients. First, 316 articles including 101 different outcome measures were identified, addressing the OMERACT pain and function domains most frequently but under-representing QoL. Second, 12 articles investigating measurement properties of 12 outcome measures were identified. The methodological quality of these studies was poor to fair, implying that based on the literature no recommendations to use any of the outcome measures can yet be made.


2019 ◽  
Vol 46 (8) ◽  
pp. 1006-1013 ◽  
Author(s):  
Esi M. Morgan ◽  
Jane E. Munro ◽  
Jennifer Horonjeff ◽  
Ben Horgan ◽  
Beverley Shea ◽  
...  

Objective.The current Juvenile Idiopathic Arthritis (JIA) Core Set used in randomized controlled trials (RCT) and longitudinal observational studies (LOS) was developed without the input of patients/parents. At the Outcome Measures in Rheumatology (OMERACT) 2016, a special interest group voted to reconsider the core set, incorporating broader input. We describe subsequent work culminating in an OMERACT 2018 plenary and consensus voting.Methods.Candidate domains were identified through literature review, qualitative surveys, and online discussion boards (ODB) held with patients with JIA and parents in Australia, Italy, and the United States. A Delphi process with parents, patients, healthcare providers, researchers, and regulators served to edit the domain list and prioritize candidate domains. After the presentation of results, OMERACT workshop participants voted, with consensus set at > 70%.Results.Participants in ODB were 53 patients with JIA (ages 15–24 yrs) and 55 parents. Three rounds of Delphi considering 27 domains were completed by 190 (response rate 85%), 201 (84%), and 182 (77%) people, respectively, from 50 countries. There was discordance noted between domains prioritized by patients/parents compared to others. OMERACT conference voting approved domains for JIA RCT and LOS with 83% endorsement. Mandatory domains are pain, joint inflammatory signs, activity limitation/physical function, patient’s perception of disease activity (overall well-being), and adverse events. Mandatory in specific circumstances: inflammation/other features relevant to specific JIA categories.Conclusion.Following the OMERACT methodology, we developed an updated JIA Core Domain Set. Next steps are to identify and systematically evaluate best outcome measures for these domains.


Sign in / Sign up

Export Citation Format

Share Document