Abstracts tagged "patient engagement"

Abstract Number: 2699 • 2014 ACR/ARHP Annual Meeting
Optimizing Scleroderma Centers of Excellence: Perspectives from Patients and Scleroderma (SSc) Experts
Veronika K. Jaeger¹, Andrew Aubin², Nancy Baldwin³, Kim Fligelstone⁴, Robyn Sims⁵, Joep Welling⁶, Ryan Burrill⁷, Kerri Connolly⁷, Tracy Frech⁸, Jessica K. Gordon⁹, Tanaka Ngcozana¹⁰, Monika Kowalczyk¹¹, Matthew R. Lammi¹², Ulrich A. Walker¹ and Lesley Ann Saketkoo¹³, ¹Department of Rheumatology, University Hospital Basel, Basel, Switzerland, Basel, Switzerland, ²Louisiana State University School of Medicine, New Orleans, LA, ³Scleroderma Foundation - Chicago Support Group, Chicago, IL, ⁴Royal Free Hospital, Scleroderma Unit and Scleroderma Society, London, United Kingdom, ⁵Scleroderma Australia, Victoria, Australia, ⁶The Dutch Patient Organization for Systemic Autoimmune Diseases, Utrecht, Netherlands, ⁷Scleroderma Foundation, Boston, MA, ⁸Div of Rheumatology, University of Utah, Salt Lake City, UT, ⁹Rheumatology, Hospital for Special Surgery, New York, NY, ¹⁰Rheumatology Department, Lower, Royal Free hospital, London, United Kingdom, ¹¹DIvision of Gastroenterology, Tulane University School of Medicine, New Orleans, LA, ¹²Louisiana State University Health Sciences Center, Pulmonary and Critical Medicine, New Orleans, LA, ¹³Scleroderma and Sarcoidosis Patient Care and Research Center, Rheumatology and Pulmonary Medicine, Louisiana State University Health Sciences Center, New Orleans, LA
Background/Purpose: SSc is a complex, diffuse, devastating health condition of vascular injury, inflammation and fibrosis resulting in multiple organ-system derangements with high impact on…
Abstract Number: 2012 • 2014 ACR/ARHP Annual Meeting
Moving Social Media Beyond Health Education and into Patient Engagement
Xiaohui Yan¹ and R. Paola Daly², ¹Lupus Foundation of America, Washington, DC, ²Research & Education, Lupus Foundation of America, Washington, DC
Background/Purpose During Lupus Awareness Month, Lupus Foundation of America conducted several social media-specific activities, including sharing facts with the end goal of increasing health knowledge…
Abstract Number: 2007 • 2014 ACR/ARHP Annual Meeting
Using Photovoice Techniques to Empower Lupus Patients and Create Public Awareness: A Program Evaluation
Jessica Rowshandel and Diane Gross, S.L.E. Lupus Foundation, New York, NY
Background/Purpose: Lupus through the Lens is a photography project for people with lupus to capture, in pictures, what it means to live with lupus. Created…
Abstract Number: 1981 • 2014 ACR/ARHP Annual Meeting
A Qualitative Analysis of Methotrexate Injection Videos on Youtube
Rebekah Rittberg¹, Tharindri Dissanayake² and Steven J. Katz³, ¹University of Manitoba, Winnipeg, MB, Canada, ²Medicine, University of Alberta, Edmonton, AB, Canada, ³Rheumatology, University of Alberta, Edmonton, AB, Canada
Background/Purpose: Methotrexate (MTX) is one of the most commonly prescribed disease modifying antirheumatic drugs for rheumatoid arthritis. While data suggests subcutaneously administered methotrexate is more…
Abstract Number: 715 • 2014 ACR/ARHP Annual Meeting
The REAL Life with Lupus Study: Developing a Patient Reported Outcome Measure for Use in Clinical Trials and Clinical Care
R. Paola Daly¹, Sarah Gilman², Joan T. Merrill³, Leslie M. Hanrahan⁴, Alisha Ladenburg² and Anca Askanase⁵, ¹Research & Education, Lupus Foundation of America, Washington, DC, ²Lupus Foundation of America, Washington, DC, ³Department of Clinical Pharmacology, Oklahoma Medical Research Foundation, Oklahoma City, OK, ⁴Education & Research, Lupus Foundation of America, Washington, DC, ⁵Columbia University Medical Center, New York, NY
Background/Purpose: The goal of this study is to better understand how people with systemic lupus erythematosus (SLE) in the United States experience the disease. Results…
Abstract Number: 416 • 2014 ACR/ARHP Annual Meeting
Using Patient Reported Outcome Measures to Classify Disease Activity States in Rheumatoid Arthritis: A Comparison of Patient-Derived Versions of Clinical Disease Activity Index (CDAI), Simplified Disease Activity Index (SDAI) and Disease Activity Score 28 (DAS28)
Erin Carruthers¹, Noura AL Osaimi², Charles H Goldsmith³, Paul Adam⁴ and Diane Lacaille⁵, ¹Arthritis Research Centre of Canada, Richmond, BC, Canada, ²Rheumatology, University of Ottawa, Ottawa, ON, Canada, ³Health Sciences, Simon Fraser University, Burnaby, BC, Canada, ⁴Mary Pack Arthritis Centre, Vancouver, BC, Canada, ⁵Medicine, University of British Columbia, Vancouver, BC, Canada
Background/PurposeIn RA the target for treatment is clinical remission or minimal disease activity. Patient self- monitoring of disease activity may enhance treatment by providing early…
Abstract Number: 384 • 2014 ACR/ARHP Annual Meeting
Using Patient Reported Outcome Measures to Classify Disease Activity States in Rheumatoid Arthritis: A Comparison of Patient Activity Score (PAS) and Routine Assessment of Patient Index Data (RAPID)
Erin Carruthers¹, Noura AL Osaimi², Charles H Goldsmith³, Paul Adam⁴ and Diane Lacaille⁵, ¹Arthritis Research Centre of Canada, Richmond, BC, Canada, ²Rheumatology, University of Ottawa, Ottawa, ON, Canada, ³Health Sciences, Simon Fraser University, Burnaby, BC, Canada, ⁴Mary Pack Arthritis Centre, Vancouver, BC, Canada, ⁵Arthritis Research Centre of Canada, Vancouver, BC, Canada
Background/PurposeIn RA the target for treatment is clinical remission or minimal disease activity. Patient involvement in monitoring their disease activity could enhance treatment by providing…
Abstract Number: 2718 • 2013 ACR/ARHP Annual Meeting
Exploring E-Health Ethics and Multi-Morbidity: A Qualitative Study Of Patient and Clinician Experiences Using Digital Media For Health Purposes
Anne F. Townsend^1,2,3,4, Paul M Adam⁵, Linda C. Li^6,7, Jenny Leese¹, Michael McDonald⁸, Sheila Kerr⁹, Gordon Whitehead¹⁰ and Catherine L. Backman¹¹, ¹Rheumatology, Arthritis Research Centre of Canada, Richmond, BC, Canada, ²Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, BC, Canada, ³Qualitative Research, Arthritis Research Centre of Canada, Richmond, BC, Canada, ⁴University of British Columbia, Vancouver, BC, Canada, ⁵Rheumatology Liaison, Mary Pack Arthritis Centre, Vancouver, BC, Canada, ⁶Physical Therapy, University of British Columbia, Vancouver, BC, Canada, ⁷Physical Therapy, Arthritis Centre of Canada, Richmond, BC, Canada, ⁸Maurice Young Centre for Applied Ethics, School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada, ⁹Arthritis Patient Advisory Board, Richmond, BC, Canada, ¹⁰Consumer Advisory Board, Vancouver, BC, Canada, ¹¹Arthritis Research Centre of Canada, Richmond, BC, Canada
Background/Purpose: E-Health can potentially transform and enhance health care delivery and empower patients. E-health includes a spectrum of digital health services and information communicated through…
Abstract Number: 1709 • 2013 ACR/ARHP Annual Meeting
Rheumatoid Arthritis Patient Cardiovascular Disease Prevention Experiences: Qualitative Analysis and Implications
Christie M. Bartels¹, Sarah Tweddell², Barbara Bowers³, Elizabeth Jacobs⁴ and Tonya Roberts³, ¹Rheumatology/Medicine, University of Wisconsin School of Medicine and Public Health, Madison, WI, ²UW School of Medicine and Public Health, Madison, WI, ³UW School of Nursing, Madison, WI, ⁴Internal Medicine, UW School of Medicine and Public Health, Madison, WI
Background/Purpose: Although rheumatoid arthritis (RA) increases cardiovascular disease (CVD) risk, RA patients receive less CVD preventive care than peers. We previously showed gaps in lipid…
Abstract Number: 1557 • 2013 ACR/ARHP Annual Meeting
Assessing The Real Life Impact Of Psoriatic Arthritis On Disability, Quality Of Life, and Provider Satisfaction
M. Elaine Husni¹, Daniel Duch² and Neil J. Korman³, ¹Rheumatology Dept A50, Cleveland Clinic Foundation, Cleveland, OH, ²Curatio CME Institute, Exton, PA, ³Case Western Reserve Univ (Uni, University Hospitals Dermatolo, Cleveland, OH
Background/Purpose: Despite the availability of more targeted therapies for psoriatic arthritis (PsA), an assessment of the impact these have had on patient well-being has not recently…
Abstract Number: 984 • 2013 ACR/ARHP Annual Meeting
Development and Usability Testing Of The Arthritis Health Journal: An Online Tool To Promote Self-Monitoring In People With Rheumatoid Arthritis
Erin Carruthers¹, Paul M Adam², Hilary Horlock³, Linda C. Li^4,5, Anne F. Townsend⁶, Charles H Goldsmith^7,8, Beverly Mitchell⁹ and Diane Lacaille^10,11, ¹Arthritis Research Centre of Canada, Richmond, BC, Canada, ²Rheumatology Liaison, Mary Pack Arthritis Centre, Vancouver, BC, Canada, ³Information Management / Information Technology Services, Provincial Health Services Authority, Vancouver, BC, Canada, ⁴Physical Therapy, University of British Columbia, Vancouver, BC, Canada, ⁵Physical Therapy, Arthritis Centre of Canada, Richmond, BC, Canada, ⁶Rheumatology, Arthritis Research Centre of Canada, Richmond, BC, Canada, ⁷Health Sciences, Simon Fraser University, Burnaby, BC, Canada, ⁸Biostatistics, Arthritis Research Centre of Canada, Richmond, BC, Canada, ⁹Business Solutions and Collaboration, Provincial Health Services Authority, Vancouver, BC, Canada, ¹⁰Rheumatology, Arthritis Research Centre of Canada, University of British Columbia, Richmond, BC, Canada, ¹¹Medicine, University of British Columbia, Vancouver, BC, Canada
Background/Purpose: Patient passports have been used in chronic diseases to promote the active involvement of patients in their care, and have led to better treatment…

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