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Using Patient-Reported Outcome Measures to Capture the Patient's Voice in Research and Care of Juvenile Idiopathic Arthritis
Institution:1. Pediatric Rheumatology, University of Utah, 81 Mario Capecchi Way, 4th Floor, Salt Lake City, UT 84113, USA;2. Division of Developmental Medicine, Boston Children’s Hospital, 300 Longwood Avenue BCH3185, Boston, MA 02115, USA;3. Division of Adolescent/Young Adult Medicine, Boston Children’s Hospital, 300 Longwood Avenue BCH3187, Boston, MA 02115, USA;4. Department of Pediatrics, Harvard Medical School, 300 Longwood Avenue BCH3187, Boston, MA 02115, USA;5. Computational Health Informatics Program, Boston Children’s Hospital, 300 Longwood Avenue BCH3187, Boston, MA 02115, USA;1. Division of Infectious Diseases, Brigham & Women''s Hospital, Boston, Mass;2. Department of Internal Medicine, Brigham & Women''s Hospital, Boston, Mass;3. Department of Internal Medicine, University of California San Francisco Medical Center;4. Department of Ophthalmology, Massachusetts Eye and Ear Infirmary, Boston;5. Department of Pathology, Brigham & Women''s Hospital, Boston, Mass;6. Department of Ophthalmology, Joslin Diabetes Center, Beetham Eye Institute, Boston, Mass;1. Department of Clinical Medicine (Pediatrics), Sherbrooke University, Chicoutimi Hospital, Québec City, Québec, Canada;2. Cardiovascular Health Action Association, Québec City, Québec, Canada;3. Department of Pharmacy, Laval University, Québec City, Québec, Canada;4. Quebec Heart and Lung Institute, Québec City, Québec, Canada;1. Centre de dépistage et de prise en charge des troubles psychiatriques d’origine génétique, pôle Ouest, centre hospitalier Le Vinatier, 95, boulevard Pinel, 69677 Bron cedex, France;2. Centre de neuroscience cognitive, UMR 5229 (CNRS et université Lyon 1), 67, boulevard Pinel, 69675 Bron cedex, France;3. Service de génétique et centre de référence des anomalies du développement, GHE, hospices civils de Lyon, 59, boulevard Pinel, 69500 Bron, France;4. Centre de recherche en neurosciences de Lyon, Inserm U1028, UMR CNRS 5292, université Claude-Bernard – Lyon 1, 95, boulevard Pinel, 69500 Bron, France;5. Unité de recherche de l’Office médico-pédagogique, département de psychiatrie, faculté de médecine, université de Genève, 24, rue du Général-Dufour, 1211 Genève 4, Suisse;6. Université de Bourgogne, esplanade Erasme, 21078 Dijon, France;7. SUR, centre hospitalier Le Vinatier, 95, boulevard Pinel, 69500 Bron, France;8. Département de médecine génétique et développement, faculté de médecine, université de Genève Michel-Servet 1, 24, rue du Général-Dufour, 1211 Genève 4, Suisse;9. Pôle Est, centre hospitalier Le Vinatier, 95, boulevard Pinel, 69677 Bron cedex, France;1. California Pacific Medical Center, San Francisco, California;2. Department of Ophthalmology, Stanford University School of Medicine, Stanford, California;3. West Coast Retina Medical Group, San Francisco, California;1. Department of Nephrology and Clinical Immunology, Maastricht University Medical Center, Maastricht, The Netherlands;2. Department of Pediatrics, Maastricht University Medical Center, Maastricht, The Netherlands;3. Department of Pediatrics, Zuyderland Medical Center, Sittard-Geleen, The Netherlands
Abstract:
Keywords:Juvenile arthritis  Health outcomes  Patient-centered care  Self-report  Quality of life  Pediatric rheumatology  Chronic disease  Comparative effectiveness research
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