A5057283825- Mental Health and Patient Involvement
- Disability Rights and Representation
- Delphi Technique in Research
- Family and Disability Support Research
- Adolescent and Pediatric Healthcare
- Cancer survivorship and care
- Autoimmune and Inflammatory Disorders Research
- Kawasaki Disease and Coronary Complications
- Disability Education and Employment
Arthritis Foundation
2007-2020
University Medical Center
2019
Cincinnati Children's Hospital Medical Center
2019
Golisano Children's Hospital
2019
University of Cincinnati
2019
Research Network (United States)
2019
Johns Hopkins University
2019
Seattle Children's Hospital
2019
University of Kansas
2007
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 Outcome Measures Rheumatology (OMERACT) 2016, a special interest group voted to reconsider core set, incorporating broader input. We describe subsequent work culminating an OMERACT 2018 plenary consensus voting. Methods. Candidate domains were identified through literature review,...
ABSTRACT Objective Patient‐reported outcome measures (PROMs) are increasingly used in clinical settings but may not provide benefits to patients outside of health encounters. The Arthritis Foundation’s Live Yes! Network provides an opportunity for PROM use by individuals and the network that assists with managing their arthritis between Our objective was develop a patient‐reported outcomes platform network, INSIGHTS, using mixed methods extensive stakeholder input. Methods A longitudinal...