Abstracts tagged "Qualitative Research"

Abstract Number: 0400 • ACR Convergence 2021
Item Development for the Assessment of Systemic Sclerosis-associated Raynaud’s Phenomenon (ASRAP) Questionnaire
John Pauling¹, Lesley Ann Saketkoo², Dinesh Khanna³, Christopher Denton⁴, Tracy Frech⁵, Ariane Herrick⁶, Laura Hummers⁷, Ami Shah⁸ and Robyn Domsic⁹, ¹Royal National Hospital for Rheumatic Diseases, Bath, United Kingdom, ²University Medical Center - Comprehensive Pulmonary Hypertension Center, New Orleans, LA, ³University of Michigan, Ann Arbor, MI, ⁴University College London Division of Medicine, Centre for Rheumatology and Connective Tissue Diseases, London, United Kingdom, ⁵University of Utah, Salt Lake City, UT, ⁶University of Manchester, Salford, United Kingdom, ⁷Johns Hopkins Univerisity, Baltimore, MD, ⁸Johns Hopkins Rheumatology, Baltimore, MD, ⁹University of Pittsburgh, Pittsburgh, PA
Background/Purpose: The episodic and uniquely personalised nature of Raynaud’s phenomenon (RP) has led to reliance upon self-report to capture how patients ‘feel’ and ‘function’. Existing…
Abstract Number: 1644 • ACR Convergence 2021
Storytelling of Young Adults with Chronic Rheumatologic Illnesses: A Pilot Study
Aviya Lanis¹, Emilee Tu², Malki Peskin³, Maryann Melendez¹, Gabriel Tarshish⁴, Alisha Akinsete⁵, Alicia Hoffman¹, Kathleen Kenney-Riley⁶, Tamar Rubinstein⁷ and Dawn Wahezi¹, ¹Children's Hospital at Montefiore, Bronx, NY, ²Albert Einstein School of Medicine, Bronx, NY, ³Montefiore, Bronx, NY, ⁴Children's Hospital at Montefiore, New York, NY, ⁵Montefiore, Wayne, NJ, ⁶Mercy College, Dobbs Ferry, NY, ⁷Albert Einstein College of Medicine, White Plains, NY
Background/Purpose: Storytelling is a universal form of communication that allows expression of experiences. Narrative medicine can be described as a subset of storytelling in which…
Abstract Number: 0402 • ACR Convergence 2021
What Is the Patient’s Perspective on Symptoms Experience in Limited Cutaneous Systemic Sclerosis?
Alain Lescoat¹, Susan Murphy², Yen Chen³, Nadia Vann¹, David Cella⁴ and Dinesh Khanna³, ¹Michigan Scleroderma Program, University of Michigan, Ann Arbor, MI, ²University of Michigan, Grosse Ile, MI, ³University of Michigan, Ann Arbor, MI, ⁴Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL
Background/Purpose: Limited cutaneous SSc (lcSSc) affects approximately 60-70% of SSc patients but drug development and therapeutic research has largely focused on the more severe diffuse…
Abstract Number: 1714 • ACR Convergence 2021
Exploring the Sexual and Reproductive Health (SRH) Needs of Men with Rheumatic Diseases
Olivia Stransky¹, Nicole Hunt², John Richards³ and Mehret Birru Talabi¹, ¹University of Pittsburgh, Pittsburgh, PA, ²UPMC, Pittsburgh, PA, ³Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, PA
Background/Purpose: Few studies have comprehensively evaluated the information needs and priorities that men with rheumatic diseases have about their sexual and reproductive health (SRH). This…
Abstract Number: 0645 • ACR Convergence 2021
Time Burden of QTc Screening for HCQ Users at a Single VA Rheumatology Clinic
Iziegbe Ehiorobo¹, Anna Montgomery² and Gabriela Schmajuk¹, ¹University of California San Francisco, San Francisco, CA, ²Department of Veterans Affairs, Tiburon, CA
Background/Purpose: Hydroxychloroquine (HCQ) is a commonly used medication in the treatment of rheumatic diseases. New guidance from the ACR supports routine monitoring of the QT…
Abstract Number: 1755 • ACR Convergence 2021
Increasing Participation of Underrepresented Groups in Lupus Clinical Trials: Insights from Qualitative Interviews with Patients and Physicians
Saira Sheikh¹, Maria Naylor², Becky Lane², Jennifer Sacks², Janine Gaiha-Rohrbach² and Cherie Butts², ¹University of North Carolina Thurston Arthritis Research Center, and Department of Medicine, Division of Rheumatology, Allergy and Immunology, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, ²Biogen, Cambridge, MA
Background/Purpose: Systemic lupus erythematosus disproportionately affects Black/African American (AA) and Latino/a populations.1 Challenges to engage and include these populations in clinical trials (CTs) can be…
Abstract Number: 0799 • ACR Convergence 2021
Relationships of Rheumatology Care and Patient Experiences to Rheumatoid Arthritis Remission
Kelly O'Neill¹, Kathryne Marks², Pamela Sinicrope³, Cynthia Crowson⁴, Elena Myasoedova³ and John Davis³, ¹Rheumatoid Patient Foundation, Lutz, FL, ²Rheumatoid Patient Foundation, Boston, MA, ³Mayo Clinic, Rochester, MN, ⁴Mayo Clinic, Eyota, MN
Background/Purpose: Remission is a well-established optimal outcome in rheumatoid arthritis (RA) treatment, yet a minority of patients reach this goal. There is not one recognized…
Abstract Number: 1069 • ACR Convergence 2021
Supporting Patient-Centered Care in the Pediatric Rheumatology Setting: Patient, Family and Provider Experiences with OurNotes
Uptej Khalsa¹, Rajdeep Pooni², Christy Sandborg¹, Imelda Balboni¹, Karen Wayman³ and Tzielan Lee⁴, ¹Stanford University, Palo Alto, CA, ²Stanford Children's Health, Palo Alto, CA, ³Stanford Children’s Health, Palo Alto, CA, ⁴Stanford University School of Medicine, Palo Alto, CA
Background/Purpose: Health information transparency enabled by the widespread adoption of patient portals and open notes has truly transformed the way healthcare is delivered. However, broader…
Abstract Number: 1122 • ACR Convergence 2021
Patient-perceived Solutions to the Treatment Barriers in Knee Osteoarthritis: A Qualitative Study from a Diverse Patient Group Including Racial/ethnic Minorities
Jasvinder Singh, University of Alabama at Birmingham, Birmingham, AL
Background/Purpose: Knee osteoarthritis (OA) has worse outcomes in racial/ethnic minorities. Yet, most of the qualitative studies include primarily Caucasian people with knee OA, with minimal…
Abstract Number: 1123 • ACR Convergence 2021
“It’s a Dance Between Managing Both [Diabetes and Osteoarthritis]”: A Qualitative Study Exploring Perspectives of Persons with Knee Osteoarthritis and Type 2 Diabetes Mellitus on the Impact of Osteoarthritis on Diabetes Management and Daily Life
Lauren King¹, Esther Waugh¹, Crystal McKay¹, Ian Stanaitis² and Gillian Hawker¹, ¹University of Toronto, Toronto, ON, Canada, ²Women's College Hospital, Toronto, ON, Canada
Background/Purpose: The links between osteoarthritis (OA) and other common chronic conditions, such as type 2 diabetes mellitus (T2DM), are increasingly being appreciated in epidemiological studies.…
Abstract Number: 1157 • ACR Convergence 2021
Patient Perspective on the Non Medical Switch of Originator to Its Biosimilar in Inflammatory Arthritis Using a Social Media Survey
David Vega Morales¹, Alejandro Garza-Alpirez² and Carlos Andrés Díaz-Garza², ¹Hospital Universitario, Garcia, Mexico, ²Tecnologico de Monterrey, Escuela de Medicina y Ciencias de la Salud, San Pedro, Mexico
Background/Purpose: The use of biosimilars instead of its originator is a controversial subject with many implications. It is considered that a non medical switch should…
Abstract Number: 1159 • ACR Convergence 2021
Improving Healthcare Transition Implementation: Recommendations from Young Patients with Rheumatic Conditions
Courtney Wells¹, Peter Chira², Dana Guglielmo³, Stacy Ardoin⁴, Katelyn Melcher⁵, Meghan Trimble⁶ and Kristine Carandang⁷, ¹University of Wisconsin-River Falls, White Bear Lake, MN, ²Pediatric Rheumatology, University of California San Diego, Rady Children’s Hospital, San Diego, CA, ³Student, Atlanta, GA, ⁴Nationwide Children's Hospital, Columbus, OH, ⁵Patient Partner, Ankeny, IA, ⁶Patient Partner, Minneapolis, MN, ⁷Independent, San Diego, CA
Background/Purpose: Implementation of structured healthcare transition processes remains elusive for most US rheumatology clinics (Johnson et al., 2021). Although research studies have proposed models and…
Abstract Number: 0256 • ACR Convergence 2020
Patient Perspective of the Type 1 and 2 SLE Model: A Qualitative Study
Amanda Eudy¹, Amy Corneli², Kevin McKenna², Mithu Maheswaranathan¹, Bryce Reeve², David Pisetsky³ and Megan Clowse⁴, ¹Duke University, Durham, NC, ²Duke University, Durham, ³Duke University Medical Center, Durham, NC, ⁴Duke University, Chapel Hill, NC
Background/Purpose: To better characterize the signs and symptoms of systemic lupus erythematosus (SLE) we have developed a conceptual model to characterize SLE activity into two dimensions: Type 1…
Abstract Number: 1784 • ACR Convergence 2020
Roles and Perspectives of Partners of Women with Rheumatoid Arthritis on Reproductive Decision Making: A Constructivist Grounded Theory Study
Ria Garg¹, Nevena Rebic², Neda Amiri¹, Glen Hazlewood³, Corisande Baldwin⁴, Stephanie Ensworth¹, Laurie Proulx⁵ and Mary De Vera², ¹University of British Columbia, Vancouver, BC, Canada, ²Arthritis Research Canada, University of British Columbia, Vancouver, BC, Canada, ³University of Calgary, Calgary, AB, Canada, ⁴University of British Columbia, Calgary, AB, Canada, ⁵Canadian Arthritis Patient Alliance, Ottawa, Canada
Background/Purpose: Partners of women with rheumatoid arthritis (RA) often take on caregiving roles given the debilitating nature of RA. No research to date has explored…
Abstract Number: 0436 • ACR Convergence 2020
The Addressing Lupus Pillars for Health Advancement (ALPHA) Project: Establishing Consensus and Prioritization of Global Community Recommendations to Address Major Challenges in Lupus Diagnosis, Care, Treatment and Research
Karin Tse¹, Sanjyot Sangodkar², Kathleen Arntsen³, Sang-Cheol Bae⁴, Lauren Bloch², Ian Bruce⁵, Erin Connolly-Strong⁶, Karen Costenbader⁷, Thomas Dörner⁸, Sydney Evans⁹, Timothy Franson², Kenneth Getz¹⁰, Amy Kao¹¹, Kenneth Kalunian¹², Bradley Dickerson¹³, Susan Manzi¹⁴, Eric Morand¹⁵, Yaritza Peña¹⁰, Sandra Raymond¹⁶, Brad Rovin¹⁷, Laura Schanberg¹⁸, Joan Von Feldt¹⁹, Victoria Werth²⁰, Angel Williams²¹, David Zook² and Leslie Hanrahan¹⁶, ¹Lupus Foundation of America, DC, WA, ²Faegre Drinker Consulting, Washington, DC, ³Lupus and Allied Diseases Association, Inc., Verona, NY, ⁴Department of Rheumatology, Hanyang University Hospital for Rheumatic Diseases, Seoul, Republic of Korea, ⁵Centre for Epidemiology Versus Arthritis, The University of Manchester and NIHR Manchester Biomedical Research Centre, Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, United Kingdom, ⁶Mallinckrodt, Austin, TX, ⁷Brigham and Women's Hospital and Harvard Medical School, Boston, MA, ⁸DRFZ and Charité University Hospitals, Berlin, Germany, ⁹Lupus Patient Representative, Riverdale, MD, ¹⁰Tufts Center for the Study of Drug Development, Boston, MA, ¹¹EMD Serono (a business of Merck KGaA, Darmstadt, Germany), Billerica, MA, ¹²University of California San Diego, La Jolla, CA, ¹³Aurinia Pharmaceuticals, Fort Washington, PA, ¹⁴Lupus Center of Excellence, Autoimmunity Institute, Allegheny Health Network, Pittsburgh, PA, ¹⁵Medicine, School of Clinical Sciences at Monash Health, Monash University, Melbourne, Australia, ¹⁶Lupus Foundation of America, Washington, DC, ¹⁷The Ohio State University, Columbus, ¹⁸Duke University Medical Center, Durham, NC, ¹⁹GlaxoSmithKline, WILMINGTON, DE, ²⁰University of Pennsylvania and the Michael J. Crescenz VA Medical Center, Philadelphia, PA, ²¹Lupus Patient Representative, Richmond, VA
Background/Purpose: The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus effort to identify, prioritize and address top barriers in lupus impacting…

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