Abstracts tagged "Qualitative Research"

Abstract Number: 1626 • ACR Convergence 2025
A Delphi Exercise Informing the Development of Criteria to Measure Response to Treatment in Giant Cell Arteritis
Medha Soowamber¹, Milena Bond², Catalina Sanchez Alvarez³, Carol Langford⁴, Sibel Aydin⁵, FRANK BUTTGEREIT⁶, Dario Camellino⁷, Maria Cid⁸, Peter Grayson⁹, Bernhard Hellmich¹⁰, Tanaz Kermani¹¹, Nader Khalidi¹², Sarah Mackie¹³, Alfred Mahr¹⁴, Eric L Matteson³, Mehrdad Maz¹⁵, Peter Merkel¹⁶, Paul Monach¹⁷, Lorna Neill¹⁸, Cristina Ponte¹⁹, Carlo Salvarani²⁰, Wolfgang Schmidt²¹, Peter Villiger²², Kenneth Warrington²³, Christian Dejaco²⁴, Sofia Ramiro²⁵ and Zahi Touma²⁶, ¹Mount Sinai Hospital, University of Toronto, Toronto, ON, Canada, ²South Tyrol Health Trust and Teaching Hospital of the Paracelsus Medical University, Brunico, Italy, ³Mayo Clinic College of Medicine and Science, Rochester, MN, ⁴Cleveland Clinic, Moreland Hills, OH, ⁵Department of Medicine, University of Ottawa, The Ottawa Hospital Research Institute, Ottawa, ON, Canada, ⁶Charité University Medicine Berlin, Berlin, Berlin, Germany, ⁷"La Colletta" hospital, Azienda Sanitaria Locale ³ Genovese, Arenzano, Italy, ⁸Department of Autoimmune Diseases (member of European Reference Network RITA), Hospital Clinic, University of Barcelona, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Barcelona, Spain, ⁹National Institutes of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health (NIH), Chevy Chase, MD, ¹⁰Department of Internal Medicine, Rheumatology, Pulmonology, Nephrology and Diabetology, Medius Kliniken Kirchheim/Teck, University Tübingen, Tübingen, Germany, Kirchheim-Teck, Germany, ¹¹David Geffen School of Medicine, University of California, Los Angeles, CA, ¹²Department of Medicine, McMaster University and St. Joseph’s Healthcare, Hamilton, Canada, ¹³University of Leeds, Leeds, United Kingdom, ¹⁴Klinik für Rheumatologie, Kantonspital St Gallen, St Gallen, Switzerland, ¹⁵The University of Kansas Medical Center, Kansas City, KS, ¹⁶University of Pennsylvania, Philadelphia, PA, ¹⁷VA Boston Healthcare System, Boston, MA, ¹⁸Patient Charity Polymyalgia Rheumatica and Giant Cell Arteritis Scotland, Nethy Bridge, United Kingdom, ¹⁹Unidade Local de Saúde de Santa Maria, Lisbon, Portugal, ²⁰Unit of Rheumatology, Azienda USL - IRCCS di Reggio Emilia, and University of Modena and Reggio Emilia, Reggio Emilia, Italy, ²¹Immanuel Krankenhaus Berlin, Medical Centre for Rheumatology Berlin-Buch; Waldfriede Hospital, Rheumatology, Berlin, Germany, ²²Medical Center Monbijou, Rheumatology and Clinical Immunology, Bern, Switzerland, ²³Mayo Clinic, ROCHESTER, MN, ²⁴Medical University of Graz, Graz, Austria, ²⁵Leiden University Medical Center, Bunde, Netherlands, ²⁶University of Toronto, Toronto, ON, Canada
Background/Purpose: The therapeutic landscape of giant cell arteritis (GCA) is growing rapidly but there are currently no internationally standardized criteria for assessing response to treatment…
Abstract Number: 1494 • ACR Convergence 2025
Comparing Childhood-Onset Versus Adult-Onset Systemic Lupus Erythematosus Young Adults’ Lived Employment Experiences
NILOFAR JAHAGHI¹, Michael Golding², Fareha Nishat³, Kaitlyn Merrill², Diane Lacaille⁴, Umut Oguzoglu², Roberta Woodgate², Jennifer Stinson⁵, Christine Peschken⁶, Zahi Touma⁷, Jennifer Protudjer² and Lily Lim⁶, ¹Karolinska Institutet, Stockholm, Sweden, ²University of Manitoba, Winnipeg, Canada, ³University of Toronto, Toronto, Canada, ⁴Arthritis Research Canada, University of British Columbia, Vancouver, BC, Canada, ⁵The Hospital for Sick Children, Toronto, ON, Canada, ⁶University of Manitoba, Winnipeg, MB, Canada, ⁷University of Toronto, Toronto, ON, Canada
Background/Purpose: Young adulthood (18-30 years) is a life stage with many transitions. Young adults with Systemic Lupus Erythematosus must navigate this period while living with…
Abstract Number: 1294 • ACR Convergence 2025
Implementation of Pneumococcal Vaccination in Patients with Childhood-Onset Systemic Lupus Erythematous
Kristina Ciaglia¹ and Magan Fosso², ¹UT Southwestern, Children's Medical Center, and Scottish Rite for Children, Dallas, TX, ²UT Southwestern, Dallas, TX
Background/Purpose: Pneumococcal vaccination is critical in patients with childhood-onset systemic lupus erythematosus (cSLE) due to their immunocompromised status and increased susceptibility to serious infections. Despite…
Abstract Number: 1270 • ACR Convergence 2025
Increasing Participation in the FT819 Cell Therapy Trial Amongst People Living with Lupus: A Focus Group Study
Joy Buie¹, Safoah Agyemang¹, Andrew Henry², Andrew BitMansour³, Vaneet Sandhu⁴, Debra Zack⁵ and Michael Fisher¹, ¹Lupus Foundation of America, Washington, DC, ²Fate Therapeutics, Inc., San Diego, CA, ³Fate Therapeutics, Inc., San Carlos, CA, ⁴Fate Therapeutics, Inc., San Diego, ⁵Fate Therapeutics, San Diego
Background/Purpose: Clinical trials exploring the safety and efficacy of chimeric antigen receptor (CAR) T-cell therapy for lupus are growing. Challenges linked to recruitment for CAR…
Abstract Number: 1268 • ACR Convergence 2025
Development of the LupusCoach Chatbot: Results of a Focus Group
Leila Khalili¹, Pooja Desai², Maya Souvignier², Adrienne Pichon², Stephen Suh³, Alberto Nordmann-Gomes², Lena Mamykina² and Anca Askanase¹, ¹Columbia University Medical Center, New York, NY, ²Columbia University Irving Medical Center, New York, NY, ³Columbia University Irving Medical Center, New York City, NY
Background/Purpose: Self-management education and coaching are successful interventions for managing chronic health conditions. However, accessibility of in-person coaching is limited; digital coaching is available and…
Abstract Number: 1262 • ACR Convergence 2025
Perspectives of Lupus Patients on Quality of Life Measures: A Qualitative Study
Cristina Arriens¹, Fredonna Carthen², Alexandre Cammarata-Mouchtouris¹, Judith James¹, Joan Merrill³ and Motolani Ogunsanya⁴, ¹Oklahoma Medical Research Foundation, Oklahoma City, OK, ²Oklahoma Medical Research Foundation, Oklahoma, OK, ³Oklahoma Medical Research Foundation, Oklahoma City ⁷³¹⁰⁴, OK, ⁴University of Oklahoma Health Sciences Center, Edmond, OK
Background/Purpose: Lupus has profound impact on physical, social, and emotional well-being. Health-related quality of life (HRQOL) measures are increasingly incorporated into lupus research and the…
Abstract Number: PP01 • ACR Convergence 2025
When You Become the Story: A Journalist’s Approach to Managing Complex Care
Lindsay Guentzel
Background/Purpose: As a journalist, I’ve spent my career digging for answers. But when I became the story, I had to learn how to ask the…
Abstract Number: 1261 • ACR Convergence 2025
Use of telemedicine to address ‘off target’ symptoms in psoriatic arthritis (PsA): implementation of PsOWell™ in PsA
Carter Pason¹, Sarah Hopkins Gillespie¹, Joelle Koplin², Rachael Hewitt³, Christine Bundy³, Ethan Craig⁴, Laura Coates⁵, Jessica A. Walsh⁶ and Alexis Ogdie⁷, ¹University of Pennsylvania, Philadelphia, PA, ²Penn Medicine, Philadelphia, PA, ³University of Cardiff, Cardiff, United Kingdom, ⁴University of Pennsylvania, Wallingford, PA, ⁵Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, England, United Kingdom, ⁶Division of Rheumatology, Salt Lake City Veterans Affairs Health and University of Utah Health, Salt Lake City, UT, ⁷Department of Medicine, Perelman School of Medicine at the University of Pennsylvania, Wilmington, DE
Background/Purpose: Approximately 60-70% of patients with PsA do not reach minimal disease activity (MDA) on therapy. However, in many cases, this may not be related…
Abstract Number: 2619 • ACR Convergence 2025
What Works? A Consolidated Framework for Implementation Research-Guided Exploration of Patient Safety in Rheumatology Practices
Catherine Nasrallah¹, Cherish Wilson², Christine Hariz³, Alicia Hamblin⁴, Cammie Young⁵, gabriela Schmajuk⁶ and Jinoos Yazdany⁴, ¹University of California San Francisco (UCSF), San Francisco, CA, ²UCSF / SFVA, San Francisco, CA, ³University of California San Francisco (UCSF, San Francisco, CA, ⁴UCSF, San Francisco, CA, ⁵University of California, San Francisco, Oakland, CA, ⁶University of California, San Francisco, and San Francisco Veterans Affairs Medical Center, San Francisco, CA
Background/Purpose: Despite widespread recognition of persistent patient safety challenges in the U.S. health care system, the development of feasible and scalable solutions has lagged, particularly…
Abstract Number: 1257 • ACR Convergence 2025
Integrated Behavioral Health Services for Patients with Rheumatic Diseases: Qualitative Analysis of a Pilot Study
Shannon Teaw¹, Jessica Link-Malcolm², Michelle Ghebranious Farag³, Dorothy Patterson², Jenny Foster⁴, Sofia Bereket², Puneet Bajaj², Urooj Wahid², Elizabeth Solow², Jennifer Barton⁵ and Una Makris⁶, ¹UT Southwestern Medical School, Dallas, TX, ²UT Southwestern Medical Center, Dallas, TX, ³McGovern Medical School at UT Houston, Houston, TX, ⁴UT Southwestern Medical Center, Dallas, ⁵VA Portland Health Care System/OHSU, Portland, OR, ⁶UT Southwestern Medical Center and Dallas VA, Dallas, TX
Background/Purpose: Rheumatic diseases (RD) often cause pain, fatigue and disability. Depression and anxiety are prevalent comorbidities in RD and ideally managed with behavioral health (BH)…
Abstract Number: 2603 • ACR Convergence 2025
Evaluating the Feasibility, Acceptability, and Behavioral Impact of Brief Action Planning (BAP) Coaching for Physical Activity in Adults with Chronic Knee Symptoms: A Qualitative Study
Moath Alshahrani¹, Kristin Haglund², Miranda McIlheran², Rowland Chang³, Pamela Semanik⁴, Sheikh Iqbal Ahamed² and Daniel Pinto⁵, ¹Marquette University/ King Khalid University, Milwaukee, WI, ²Marquette University, Milwaukee, WI, ³Northwestern University Feinberg School of Medicine, Chicago, IL, ⁴Rush uUniversity, Chicago, IL, ⁵Marquette University, Wauwatosa, WI
Background/Purpose: Physical activity (PA) improves chronic knee symptoms (CKS) by decreasing pain and improving function, yet many interventions to increase PA are resource-intensive or poorly…
Abstract Number: 1050 • ACR Convergence 2025
Bridging the Gap: A Mixed-Methods Study to Enhance Integration of HCQ-SAFE, A Shared Decision-Making Tool for Hydroxychloroquine Use, in Routine Lupus Care
Isabella Hartel¹, Jay Patel¹, David Gazeley², Drake Johnson¹, Justin Levinson¹, Carmen Campbell¹, Britney Youngchild³, Shelby Gomez³, Amannda Weber⁴, Jessica Michaud⁵, Laura Dickmann⁶, Sancia Ferguson⁷, Betty Chewning⁸, Christie Bartels⁹ and Shivani Garg¹⁰, ¹University of Wisconsin, School of Medicine and Public Health, Madison, Madison, WI, ²Medical College of Wisconsin, Milwaukee, WI, ³University of Wisconsin, School of Pharmacy, Madison, WI, ⁴University of Wisconsin (UW), UW Health, Madison, WI, ⁵Medical College of Wisconsin, Milwaukee, Madison, WI, ⁶Medical College of Wisconsin, Milwaukee, Milwaukee, ⁷University of Wisconsin School of Medicine and Public Health, Madison, Madison, WI, ⁸University of Wisconsin, School of Pharmacy, Madison, ⁹University of Wisconsin School of Medicine and Public Health, Madison, WI, ¹⁰University of Madison, School of Medicine and Public Health, Madison, WI
Background/Purpose: Hydroxychloroquine (HCQ) is a key therapy for lupus (or SLE). Yet, challenged to weigh benefits vs. harms, ~80% of patients self-discontinue HCQ. Shared decision-making…
Abstract Number: 2556 • ACR Convergence 2025
Information Needs of Patients with Vasculitis
Jodi Hall, Vasculitis Foundation, Shawnee, KS
Background/Purpose: The aim of this research was to discover and characterize the information needs of patients who have been diagnosed with vasculitis. Vasculitis is a term…
Abstract Number: 1506 • ACR Convergence 2025
Perspectives on Clinical Trial Participation for Novel Advanced Therapies: A Focus Group Study in Systemic Lupus Erythematosus (SLE)
Olivia A. Stein¹, Jennifer Lee¹, Evelyne Vinet², Arielle Mendel³, Christian Pineau⁴, Leanne Mielczarek⁵ and Sasha Bernatsky², ¹Research Institute of the McGill University Health Centre, Montreal, Canada, ²Research Institute of the McGill University Health Centre, Montreal, QC, Canada, ³McGill University Health Centre, Montreal, Canada, ⁴McGill University, Montréal, QC, Canada, ⁵Lupus Canada, Newmarket, Canada
Background/Purpose: Our objective is to identify barriers and facilitators perceived by people with systemic lupus erythematosus (SLE) regarding participation in clinical trials for novel/advanced agents,…
Abstract Number: 2409 • ACR Convergence 2025
Cutaneous Lupus Activity Investigator’s Global Assessment―Revised (CLA-IGA-R) Content Validity: Cutaneous Lupus Erythematosus (CLE) Patient Qualitative Study
Joseph F Merola¹, Weihong Yang², Qianyun Li², Helen Doll³, Jason Randall³, Catherine Barbey⁴ and Feng Zeng², ¹Department of Dermatology and Department of Medicine, UT Southwestern Medical Center, Dallas, TX, ²Biogen, Cambridge, MA, ³Clinical Outcomes Solutions, Folkestone, Kent, United Kingdom, ⁴Biogen, Baar, Switzerland
Background/Purpose: The Cutaneous Lupus Activity Investigator’s Global Assessment-Revised (CLA-IGA-R) is an emerging clinician-reported outcome measure for severity of Cutaneous Lupus Erythematosus (CLE) disease activity, developed…

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