Abstracts tagged "patient engagement and systemic sclerosis"

Abstract Number: 1258 • 2017 ACR/ARHP Annual Meeting
Divided By a Common Language: Challenges in Physician-Patient Communication Limit Patient Understanding and Support in Systemic Sclerosis with Interstitial Lung Disease (SSc-ILD)
Christopher Denton¹, Bee Laird², Lizette Moros³ and José Luis Luna Flores⁴, ¹Department of Rheumatology, University College London, Royal Free Hospital, London, United Kingdom, ²Reframe Research, East Sussex, United Kingdom, ³Boehringer-Ingelheim, Ingelheim, Germany, ⁴Boehringer Ingelheim, Ingelheim, Germany
Background/Purpose: Systemic sclerosis is a potentially life-threatening, clinically diverse, and rare condition. The prognosis and course of disease is difficult to predict and treatment is…
Abstract Number: 2921 • 2016 ACR/ARHP Annual Meeting
Patient Participation in Patient Reported Outcome Instrument Development in Systemic Sclerosis
John Pauling^1,2, Tracy M. Frech^3,4, Robyn T. Domsic⁵ and Marie Hudson^6,7, ¹Department of Pharmacy and Pharmacology, University of Bath, Bath, United Kingdom, ²Department of Rheumatology, Royal National Hospital for Rheumatic Diseases, Bath, United Kingdom, ³Internal Medicine, Salt Lake City VAMC, Salt Lake, UT, ⁴Internal Medicine-Division of Rheumatology, University of Utah School of Medicine, SLC, UT, ⁵Medicine - Rheumatology, Univ of Pittsburgh Med Ctr, Pittsburgh, PA, ⁶Medicine, McGill University, Montreal, QC, Canada, ⁷Medicine/Rheumatology, Jewish General Hospital, Lady Davis Research Institute, Montreal, QC, Canada
Background/Purpose: The patient perspective captured using Patient-Reported Outcome (PRO) instruments provide valuable insight into the patient condition not always captured by physician-derived assessment tools. Target…
Abstract Number: 2707 • 2014 ACR/ARHP Annual Meeting
Systemic Sclerosis Related Calcinosis: Patients Provide What Specialists Want to Learn
Angela Christensen¹, Samara Khalique², Sophia Cenac³, Kim Fligelstone⁴, Anne Mawdsley⁵, Tracy Frech⁶, Jessica K. Gordon⁷, Murray Baron⁸, Evan Busman⁹, Virginia D. Steen¹⁰ and Lesley Ann Saketkoo¹¹, ¹Tulane University School of Medicine, New Orleans, LA, ²Louisiana State University Health Sciences Center, New Orleans, LA, ³Scleroderma and Sarcoidosis Patient Care and Research Center, Louisiana State University Health Science Center, New Orleans, LA, ⁴Royal Free Hospital, Scleroderma Unit and Scleroderma Society, London, United Kingdom, ⁵Raynaud's & Scleroderma - Care and Support UK, Cheshire, United Kingdom, ⁶Div of Rheumatology, University of Utah, Salt Lake City, UT, ⁷Rheumatology, Hospital for Special Surgery, New York, NY, ⁸Pavillion A, Rm 216, Jewish General Hospital, Montreal, QC, Canada, ⁹Atlanta Scleroderma Support Group, Atlanta, GA, ¹⁰Department of Rheumatology, Georgetown University Medical Center, Washington, DC, ¹¹Scleroderma and Sarcoidosis Patient Care and Research Center, Rheumatology and Pulmonary Medicine, Louisiana State University Health Sciences Center, New Orleans, LA
Background/Purpose: Calcinosis is a disabling, rarely discussed manifestation of SSc for which the natural history and management is poorly understood. Last year, the Scleroderma Clinical…

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