Abstracts tagged "patient engagement"

Abstract Number: 2725 • 2017 ACR/ARHP Annual Meeting
Understanding Vasculitis Patients’ Ability to Work with Numbers
Cole Rodman¹, Mary-Kate Tompkins¹, Holly Steigelman², Brad H. Rovin³, Stacy P. Ardoin⁴, Ellen Peters⁵ and Alexa Meara⁶, ¹The Ohio State University, Columbus, OH, ²The Ohio State University Wexner Medical Center, Columbus, OH, ³Ohio State University Medical Center, Columbus, OH, ⁴Pediatric & Adult Rheumatology, The Ohio State University Wexner Medical Center, Columbus, OH, ⁵Decision Research, Eugene, OR, ⁶Internal Medicine/Rheumatology, The Ohio State University Wexner Medical Center, Columbus, OH
Background/Purpose: In the case of a complex disease like vasculitis, the patient is often tasked with understanding complicated care plans and managing myriad medications. Without…
Abstract Number: 83 • 2017 Pediatric Rheumatology Symposium
Feverprints: A Crowdsourcing Study of Temperature in Health and Disease
Jonathan S. Hausmann^1,2, Nitin Gujral³, Soleh Al Ayubi³, Jared B. Hawkins³, John S. Brownstein³ and Fatma Dedeoglu², ¹Rheumatology, Beth Israel Deaconess Medical Center, Boston, MA, ²Rheumatology, Boston Children's Hospital, Boston, MA, ³Innovation & Digital Health Accelerator, Boston Children's Hospital, Boston, MA
Background/Purpose: Autoinflammatory diseases (AIDs) are a rare group of illnesses characterized by unprovoked episodes of fever and systemic inflammation. An understanding of their pathophysiology has…
Abstract Number: 456 • 2016 ACR/ARHP Annual Meeting
Patient Engagement in Research: Understanding Patient Interest and Needs
Jennifer R. Horonjeff¹, Emily L. Creek² and Cindy McDaniel³, ¹Rheumatology, Columbia University Medical Center, New York, NY, ²Consumer Health, Arthritis Foundation, Atlanta, GA, ³Arthritis Foundation, Atlanta, GA
Background/Purpose: The goal of clinical and health-related research is to benefit the end-consumer—the patient. Since patients are the experts on their unique experiences living with…
Abstract Number: 1156 • 2016 ACR/ARHP Annual Meeting
Development of a Taxonomy of Patient Engagement in Health Research
Clayon Hamilton^1,2, Bao Chau Tran^1,2, Ju Young Yoo², Jenny Leese^1,2 and Linda Li^3,4, ¹Physical Therapy, University of British Columbia, Vancouver, BC, Canada, ²Arthritis Research Canada, Richmond, BC, Canada, ³Rheumatology, Arthritis Research Canada, Richmond, BC, Canada, ⁴Department of Physical Therapy, University of British Columbia, Vancouver, BC, Canada
Development of a Taxonomy of Patient Engagement in Health Research Background/Purpose: The emergent practice of patients engaging in the conduct and decision-making aspects of health…
Abstract Number: 1224 • 2016 ACR/ARHP Annual Meeting
Healthcare and Research Priorities of Adolescents and Young Adults with Systemic Lupus Erythematosus: A Mixed-Methods Study
David Tunnicliffe^1,2, Davinder Singh-Grewal^3,4,5, Jonathan Craig^1,6, Martin Howell^1,7, Peter Tugwell⁸, Fiona Mackie^9,10, Ming-Wei Lin^3,11, Sean O'Neill¹², Angelique Ralph^1,6 and Allison Tong^1,6, ¹Sydney School of Public Health, University of Sydney, Sydney, Australia, ²Centre for Kidney Research, Children's Hospital at Westmead, sydney, Australia, ³Sydney Medical School, University of Sydney, Sydney, Australia, ⁴Department of Rheumatology, The Sydney Children's Hospital Network, Sydney, Australia, ⁵Faculty of Medicine, University of New South Wales, Sydney, Australia, ⁶Centre for Kidney Research, Children's Hospital at Westmead, Sydney, Australia, ⁷Centre for Kidney Research, Children's Hospital at Westmead, Sydne, Australia, ⁸Center For Global Health, Institute of Population Hlth, Ottawa, ON, Canada, ⁹School of Women's and Children's Health, University of New South Wales, Sydney, Australia, ¹⁰Department of Nephrology, The Sydney Children's Hospital Network, Sydney, Australia, ¹¹Department of Immunology, Westmead Hospital, Sydney, Australia, ¹²University of New South Wales, Sydney, Australia
Background/Purpose: The care of adolescents and young adults with systemic lupus erythematosus (SLE) is particularly challenging. The disease may be severe, adolescent patients have complex…
Abstract Number: 1410 • 2016 ACR/ARHP Annual Meeting
Is the Self-Assessment of Disease Activity (auto-DAS28) By Patients a Feasible and Acceptable Measure over the Long Term in Rheumatoid Arthritis (RA)? Three-Year Follow-up of a Nurse-Led Program in 771 Patients with Established RA
Laure Gossec¹, Frantz Foissac², Martin Soubrier³, Anna Molto⁴, Françoise Fayet⁵, Thomas Bardin⁶, Francis Berenbaum⁷, A Cantagrel⁸, Marie Hélène Cerato⁹, Gerard H. Chales¹⁰, Isabelle Chary-Valckenaere¹¹, Bernard Combe¹², Emmanuelle Dernis Labous¹³, Liana Euller-Ziegler¹⁴, Rene-Marc Flipo¹⁵, Philippe Gaudin¹⁶, Melanie Gilson¹⁷, Sandrine Guis¹⁸, Xavier Mariette¹⁹, Gaël Mouterde²⁰, Sophie Pouplin²¹, Pascal Richette²², Alain Saraux²³, Thierry Schaeverbeke²⁴, Jean Sibilia²⁵ and Maxime Dougados²⁶, ¹Rheumatology, Pitié Salpêtrière Hospital, Paris, France, ²COMEDRA working group, Paris, France, ³Rheumatology, Department of Rheumatology, CHU Gabriel Montpied, Clermont-Ferrand, France, ⁴Hopital Cochin, Paris Descartes University, Paris, France, ⁵Rheumatology, CHU Gabriel-Montpied, Clermont-Ferrand, France, ⁶Hôpital Lariboisière, Paris, France, ⁷Rheumatology dept, APHP St-Antoine hospital, Univ Paris 06, Paris, France, Paris, France, ⁸Purpan Hospital, Toulouse, France, ⁹University Hospital, Toulouse, France, ¹⁰CHU RENNES, Rennes, France, ¹¹University Hospital, Nancy, France, ¹²Département Rhumatologie, Hôpital Lapeyronie, Montpellier, France, ¹³Le Mans Hospital, Le Mans, France, ¹⁴Rheumatology, Nice, France, ¹⁵Rheumatology, University Hospital, Lille, France, ¹⁶Rheumatology, Grenoble University Hospital, France, Grenoble, France, ¹⁷Hopital Sud, Grenoble, France, ¹⁸Rheumatology 1, CRMBM-CEMEREM 7339, Aix-Marseille Université, AP-HM, CNRS, Marseilles, France, ¹⁹Rheumatology, Rheumatology department, Bicetre Hospital, Paris-Sud University, Le Kremlin Bicetre, France, ²⁰Rheumatology Department, Hopital Lapeyronie, Montpellier, France, ²¹Rheumatology Department & Inserm 905, Department of Rheumatology, Rouen University Hospital & Inserm 905, Institute for Biomedical Research, University of Rouen, Rouen, France, ²²Rhumatologie, Hôpital Lariboisière, Paris, France, ²³Rheumatology Department, CHU de la Cavale Blanche, Brest Cedex, France, ²⁴Rheumatology, CHU Bordeaux, Bordeaux, France, ²⁵Department of Rheumatology, Strasbourg University Hospital, Strasbourg, France, ²⁶Cochin Hospital and Paris 05 University, Paris, France
Background/Purpose: Patients with RA can be trained in self-assessment of disease activity by a self-assessment of their joints and calculation of the Disease activity Score…
Abstract Number: 2254 • 2016 ACR/ARHP Annual Meeting
Patient Adherence with Biologic Therapy in Rheumatoid Arthritis: A Real-World Review of Compliance
Laurent Chanroux, Fara Mboge and Denise Baldock, Therapy Watch, Research Partnership, London, United Kingdom
Background/Purpose: Biologic agents (bDMARDs) have been shown to help control disease progression in rheumatoid arthritis (RA) and reduce joint damage. The aim of our research…
Abstract Number: 3115 • 2016 ACR/ARHP Annual Meeting
Reconsidering the Juvenile Idiopathic Arthritis Core Set: How Patients and Caregivers Define Disease Activity
Jennifer R. Horonjeff¹, Susan Thornhill², Daniel B. Horton³, Jennifer N. Stinson⁴, Anjali Fortna⁵, Stephanie Luca⁶, Arlene Vinci⁷, Laura C. Marrow⁸, Emily L. Creek⁷, Meredith Riebschleger⁹, Alessandro Consolaro¹⁰, Jane Munro¹¹, Vibeke Strand¹², Clifton Bingham III¹³ and Esi Morgan¹⁴, ¹Rheumatology, Columbia University Medical Center, New York, NY, ²Thornhill Associates, Hermosa Beach, CA, ³Pediatrics, Division of Pediatric Rheumatology, Rutgers Robert Wood Johnson Medical School, Rutgers Biomedical and Health Sciences, New Brunswick, NJ, ⁴Anesthesia and Pain Medicine, The Hospital for Sick Children, Toronto, ON, Canada, ⁵Columbia University Medical Center, New York, NY, ⁶The Hospital for Sick Children, Toronto, ON, Canada, ⁷Consumer Health, Arthritis Foundation, Atlanta, GA, ⁸Arthritis Foundation, Atlanta, GA, ⁹Pediatric Rheumatology & Health Services Research, University of Michigan, Ann Arbor, MI, ¹⁰Pediatria II - Reumatologia, PRINTO, Istituto Giannina Gaslini, Genoa, Italy, ¹¹Rheumatology, Royal Children's Hospital, Parkville, Australia, ¹²Stanford University School of Medicine, Palo Alto, CA, ¹³Divisions of Rheumatology and Allergy, Department of Medicine, Johns Hopkins University, Johns Hopkins University, Baltimore, MD, ¹⁴Pediatric Rheumatology, Cincinnati Children's Hospital, Cincinnati, OH
Background/Purpose: The current JIA Core Set (ACR Pediatric 30) contains items that should be assessed in clinical trials for children with JIA. It was developed…
Abstract Number: 2334 • 2015 ACR/ARHP Annual Meeting
Proof of Concept Study of the Arthritis Health Journal: An Online Tool to Promote Self-Monitoring in People with Rheumatoid Arthritis (RA)
Diane Lacaille^1,2, Erin Carruthers³, Brendan van As³, Charles H. Goldsmith^3,4, Hilary Horlock⁵, Linda Li^3,6, Anne F. Townsend^3,7, Beverly Mitchell⁸ and Paul Adam⁹, ¹Rheumatology, University of British Columbia, Vancouver, BC, Canada, ²Rheumatology, Arthritis Research Canada, Richmond, BC, Canada, ³Arthritis Research Canada, Richmond, BC, Canada, ⁴Health Sciences, Simon Fraser University, Burnaby, BC, Canada, ⁵Information Management / Information Technology Services, Provincial Health Services Authority, Vancouver, BC, Canada, ⁶Physical Therapy, University of British Columbia, Vancouver, BC, Canada, ⁷Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, BC, Canada, ⁸Business Solutions and Collaboration, Provincial Health Services Authority, Vancouver, BC, Canada, ⁹Rheumatology Liaison, Mary Pack Arthritis Centre, Vancouver, BC, Canada
Background/Purpose: Patient passports have been used in chronic diseases to promote active involvement of patients in their care. In RA, patient monitoring of their disease…
Abstract Number: 2411 • 2015 ACR/ARHP Annual Meeting
Patient Preference for Using Technology to Track and Self-Manage Osteoarthritis
Laura Khurana, Ellen Durand, Sarah Gary, Tony Otero, Chris Hall and Susan Dallabrida, ERT, Boston, MA
Background/Purpose: Active and consistent self-management is essential for patients suffering from chronic diseases to improve their health. Electronic clinical (eClinical) technology may improve how patients…
Abstract Number: 25 • 2015 ACR/ARHP Annual Meeting
Attrition and Participant Characteristics in a Rheumatoid Arthritis Cohort
Angela Cesta¹, Xiuying Li¹, Mark Tatangelo^2,3 and Claire Bombardier^1,4,5, ¹Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada, ²Clinical Decision Making and Health Care, Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada, ³University of Toronto, Toronto, ON, Canada, ⁴Division of Rheumatology and Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada, ⁵Division of Rheumatology, Mount Sinai Hospital, Toronto, ON, Canada
Background/Purpose: The generalizability and validity of in longitudinal observational studies is contingent on participant characteristics. If attrition is not random, it is important to identify…
Abstract Number: 498 • 2015 ACR/ARHP Annual Meeting
Non-Adherence to Disease-Modifying Anti-Rheumatic Drugs in Patients with Rheumatoid Arthritis: An Italian Survey
Gerolamo Bianchi¹, Antonio Carletto², Oscar M. Epis³, Crescenzio Scioscia⁴, Angelo Semeraro⁵, Chiara Donati⁶, Laura Bazzichi⁷, Giovanni Lapadula⁸, Luigi Sinigaglia⁹ and Andrea Lo Monaco¹⁰, ¹Div Reumatologia, Ospedale La Colletta, Genoa, Italy, ²Rheumatology Unit, University of Verona, Verona, Italy, ³Rheumatology Unit, A.O. Ospedale Niguarda Ca' Granda, Milan, Italy, ⁴DIM - Sezione di Reuamtologia Università degli Studi di Bari "Aldo Moro", Bari, Italy, ⁵Unità Operativa di Reumatologia ASL Taranto, Taranto, Italy, ⁶Roche S.p.A., Monza, Italy, ⁷Division of Reumatology, Univeristy of Pisa, Pisa, Italy, ⁸D.I.M.I.M.P, Rheumatology Unit - University of Bari, Bari, Italy, ⁹Rheumatology Dep, I.O.G. Pini, Milan, Italy, ¹⁰Ospedale S. Anna, Ferrara, Italy
Background/Purpose: In patients (pts) with rheumatoid arthritis (RA), the non-adherence to therapy may impair the clinical outcomes, being often associated with the disease flare and…
Abstract Number: 924 • 2015 ACR/ARHP Annual Meeting
Patient and Provider Factors in Optimal Gout Management
Brian Coburn¹, Kayli Bendlin², Harlan Sayles¹ and Ted R. Mikuls¹, ¹Omaha VA Medical Center and University of Nebraska Medical Center, Omaha, NE, ²Pharmacy Service, Veterans Affairs Nebraska-Western Iowa Health Care System, Omaha, NE
Background/Purpose: Gout is the most common inflammatory arthritis worldwide. Despite its prevalence and the availability of effective therapies, studies have consistently characterized gout quality of…
Abstract Number: 1200 • 2015 ACR/ARHP Annual Meeting
Use of Focus Groups and Patient Partners to Revise an Internet Self-Management Program
Sharon Newbill¹, Dinesh Khanna², Jennifer Serrano³, Josephine Battyany⁴, Dana Rosson⁵, Cynthia Maxwell⁶, Mary Alore⁷, Laura Dyas⁸, Saville Kellner⁹, Luke Evnin¹⁰, Dennis Raisch¹¹, Richard Silver¹² and Janet L. Poole¹³, ¹University of New Mexico, Albuquerque, NM, ²Division of Rheumatology, University of Michigan, Ann Arbor, MI, ³University of Michigan, Ann Arbor, MI, ⁴Scleroderma Foundation Southern California, Culver City, CA, ⁵Medical University of South Carolina, Charleston, SC, ⁶Patient Partner, Charleston, SC, ⁷Patient Partner, Shelby Township, MI, ⁸Scleroderma Foundation Michigan Chapter, Southfield, MI, ⁹Scleroderma Research Foundation, Henderson, NV, ¹⁰Scleroderma Research Foundation, San Francisco, CA, ¹¹College of Pharmacy, University of New Mexico, Albuquerque, NM, ¹²Division of Rheumatology and Immunology, Medical University of South Carolina, Charleston, SC, ¹³Health Sciences Ctr OT Program, 1 University of New Mexico, Albuquerque, NM
Background/Purpose: Taking Charge of Systemic Sclerosis (TOSS) is an internet self-management program developed for people with systemic sclerosis (SSc). The purpose of this qualitative study…
Abstract Number: 2323 • 2015 ACR/ARHP Annual Meeting
Patient Priorities in Rheumatoid Arthritis (RA) Research: An Exploration of Patient Perspectives from Those Enrolled in an Ontario RA Cohort
Laura Fullerton¹, Angela Cesta², Catherine Hoffstetter³ and Claire Bombardier^2,4,5, ¹Support, Systems and Outcomes, University Health Network, Toronto, ON, Canada, ²Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada, ³Patient partner, Toronto, ON, Canada, ⁴Division of Rheumatology and Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada, ⁵Division of Rheumatology, Mount Sinai Hospital, Toronto, ON, Canada
Background/Purpose: Patient experiences with rheumatoid arthritis (RA) symptoms, treatments, and rheumatology care are critically important for the assessment of treatment-effectiveness and quality of care for…

All abstracts accepted to ACR Convergence are under media embargo once the ACR has notified presenters of their abstract’s acceptance. They may be presented at other meetings or published as manuscripts after this time but should not be discussed in non-scholarly venues or outlets. The following embargo policies are strictly enforced by the ACR.

Accepted abstracts are made available to the public online in advance of the meeting and are published in a special online supplement of our scientific journal, Arthritis & Rheumatology. Information contained in those abstracts may not be released until the abstracts appear online. In an exception to the media embargo, academic institutions, private organizations, and companies with products whose value may be influenced by information contained in an abstract may issue a press release to coincide with the availability of an ACR abstract on the ACR website. However, the ACR continues to require that information that goes beyond that contained in the abstract (e.g., discussion of the abstract done as part of editorial news coverage) is under media embargo until 10:00 AM ET on November 14, 2024. Journalists with access to embargoed information cannot release articles or editorial news coverage before this time. Editorial news coverage is considered original articles/videos developed by employed journalists to report facts, commentary, and subject matter expert quotes in a narrative form using a variety of sources (e.g., research, announcements, press releases, events, etc.).

Violation of this policy may result in the abstract being withdrawn from the meeting and other measures deemed appropriate. Authors are responsible for notifying colleagues, institutions, communications firms, and all other stakeholders related to the development or promotion of the abstract about this policy. If you have questions about the ACR abstract embargo policy, please contact ACR abstracts staff at [email protected].