Abstracts tagged "Patient reported outcomes"

Abstract Number: 1290 • ACR Convergence 2025
Adverse Childhood Experiences: Prevalence and Relationship to Disease and Mental Health Outcomes in Childhood-Onset Systemic Lupus Erythematosus (cSLE)
Jin Xuan Zhou¹, Stephanie Fevrier², Paris Moaf², Lawrence Ng³, Asha Jeyanathan⁴, Louise Boulard², Deborah Levy¹, Linda Hiraki¹, Ashley Danguecan⁵ and Andrea Knight⁵, ¹The Hospital for Sick Children, Toronto, ON, Canada, ²Hospital for Sick Children, Toronto, Canada, ³The Hospital for Sick Children, Toronto, Canada, Toronto, ON, Canada, ⁴The Hospital for Sick Children, Toronto, Canada, ⁵Hospital for Sick Children, Toronto, ON, Canada
Background/Purpose: Childhood-onset systemic lupus erythematosus (cSLE) is an autoimmune disease characterized by multi-organ inflammation, alongside high frequencies of mood disorders and cognitive impairment. Adverse Childhood…
Abstract Number: 0684 • ACR Convergence 2025
Translation to Spanish and Linguistic Validation of the Assessment of Systemic Sclerosis-associated Raynaud’s Phenomenon (ASRAP)
Antonia Valenzuela¹, Adriana Miguel Alvarez², Patricia E. Carreira³, Alejandra Babini⁴, Diana Rocío Gil Calderón⁵, John Pauling⁶ and Tatiana Rodriguez-Reyna², ¹Pontificia Universidad Catolica de Chile, Santiago, Chile, ²Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico, ³Hospital Universitario ¹² de Octubre, Madrid, Spain, ⁴Hospital Italiano, Córdoba, Argentina, ⁵Hospital Universitario Mayor MEDERI, Universidad del Rosario, Artmedica SAS, Bogotá, Colombia, ⁶North Bristol NHS Trust, Bristol, United Kingdom
Background/Purpose: Systemic sclerosis-associated Raynaud’s phenomenon (SSc-RP) significantly impacts patients’ quality of life, yet validated tools to assess this condition in Spanish-speaking populations are lacking. The…
Abstract Number: 0394 • ACR Convergence 2025
Predictors of quality of Life in a longitudinal cohort of patients with Uveitis, Juvenile Idiopathic Arthritis, and JIA-associated uveitis
andressa Guariento Ferreira Alves¹, Amy Cassedy², Virginia Miraldi Utz³, Alexandra Duell³, Megan Quinlan-Waters⁴, Nicole Reitz⁵, Sheila Angeles-Han⁶ and Melissa Lerman⁷, ¹The Children's Hospital of Philadelphia, Philadelphia, PA, ²Cincinnati Children's hospital medical center, cincinnati, OH, ³Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ⁴Cincinnati Children's Hospital Medical Center, CCHMC, ⁵Department of Mental Health, St. Louis, MO, ⁶Cincinnati Children's Hospital, Cincinnati, OH, ⁷Children's Hospital of Philadelphia, Philadelphia, PA
Background/Purpose: Uveitis, juvenile idiopathic arthritis (JIA), and JIA-associated uveitis (JIA-U) greatly influence children's quality of life (QOL). Our aim is to identify demographic, disease, and…
Abstract Number: 0282 • ACR Convergence 2025
Clinical Meaningfulness and Improvement Thresholds of Myositis Core Set Measures: Association with Patient-Reported Outcomes
Shiri Keret¹, Raisa Lomanto Silva², Irada Choudhuri³, Eugenia Gkiaouraki³, Tanya Chandra³, Nantakarn Pongtarakulpanit³, Shreya Sriram³, Niladri Bhowmick³, Vaidehi Kothari³, Kaushik Sreerama Reddy³, Eaman Alhassan⁴, Anushka Aggarwal⁵, Maha Almackenzie⁶, Siamak Moghadam-Kia⁴, Dana Ascherman⁷, Chester V. Oddis⁷ and Rohit Aggarwal⁸, ¹Bnai Zion Medical Center, Atlit, Israel, ²Massachusetts General Hospital, Boston, MA, ³University of Pittsburgh Medical Center, Pittsburgh, ⁴University of Pittsburgh Medical Center, Pittsburgh, PA, ⁵Indraprastha Apollo Hospital, New Delhi, India, ⁶Medical Cities of the Ministry of the Interior, Riyadh, Saudi Arabia, ⁷University of Pittsburgh, Pittsburgh, PA, ⁸University of Pittsburgh, Rheumatology and Clinical Immunology, Pittsburgh, United States of America, Pittsburgh, PA
Background/Purpose: The six myositis core set measures (CSMs) are widely utilized to assess disease activity in idiopathic inflammatory myopathies (IIM). However, their association with how…
Abstract Number: 2654 • ACR Convergence 2025
Discordance Between Patient and Physician Global Assessments in Early Systemic Sclerosis
Ellen Romich¹, Alexis Ogdie², Alisa Stephens Shields², Peter Merkel², Jessica Alvey³, Shervin Assassi⁴, Elana Bernstein⁵, Sonali Bracken⁶, Flavia Castelino⁷, Lorinda Chung⁸, Luke Evnin⁹, Tracy Frech¹⁰, Jessica Gordon¹¹, Faye Hant¹², Monica Harding¹³, Laura Hummers¹⁴, Dinesh Khanna¹⁵, Kimberly Lakin¹¹, Dorota Lebiedz-Odrobina¹³, Yiming Luo⁵, Ashima Makol¹⁶, Maureen Mayes¹⁷, Zsuzsanna McMahan¹⁸, Jerry Molitor¹⁹, Duncan Moore²⁰, Carrie Richardson²¹, Ami Shah¹⁴, Ankoor Shah²², Brian Skaug²³, Virginia Steen²⁴, John VanBuren¹³, Elizabeth Volkmann²⁵, Carleigh Zahn¹⁵ and Nora Sandorfi², ¹University of Pennsylvania, Media, PA, ²University of Pennsylvania, Philadelphia, PA, ³Utah Data Coordinating Center, University of Utah, Salt Lake City, UT, ⁴Division of Rheumatology, UTHealth Houston, Houston, Texas, USA, Houston, TX, ⁵Columbia University, New York, NY, ⁶Duke University Medical Center, Durham, NC, USA, Apex, NC, ⁷Massachusetts General Hospital, Boston, MA, ⁸Stanford University, Stanford, CA, ⁹Scleroderma Research Foundation, San Francisco, CA, ¹⁰Vanderbilt University Medical Center, Nashville, TN, ¹¹Hospital for Special Surgery, New York, NY, ¹²Medical University of South Carolina, Charleston, SC, ¹³University of Utah, Salt Lake City, UT, ¹⁴Johns Hopkins Rheumatology, Baltimore, MD, ¹⁵University of Michigan, Ann Arbor, MI, ¹⁶Mayo Clinic, Rochester, MN, ¹⁷UT Health Houston Division of Rheumatology, Houston, TX, ¹⁸UT Health Houston, Houston, TX, ¹⁹University of Minnesota, Minneapolis, MN, ²⁰Northwestern Memorial Hospital, Chicago, IL, ²¹Northwestern University, Chicago, IL, ²²Duke University, Durham, NC, ²³UTHealth Houston Division of Rheumatology, Houston, TX, ²⁴Georgetown University School of Medicine, Washington, DC, ²⁵Division of Rheumatology, Department of Medicine, University of California, David Geffen School of Medicine, Los Angeles, CA, USA, Los Angeles, CA
Background/Purpose: To determine the frequency and extent of discordance between patient and physician global assessments of disease in early systemic sclerosis and identify factors associated…
Abstract Number: 2301 • ACR Convergence 2025
Use of lived experiences in childhood Sjogren Disease to develop outcome measures for an N-of-1 treatment trial.
Sara M. Stern¹, Angela Merritt², Ludovic Trinquart³, Emma Barnboym⁴, Michelle LeeBravatti³, Suzy Richins⁵, Tressie L. Rollins⁵, Hanna M. Salzman⁵, Marisha Palm³, Cortney M. Wieber⁶, Hermine Brunner⁷ and Nora G. Singer⁸, ¹University of Utah, Salt Lake City, UT, ²Cincinnati Childrens Hospital Medical Center, Cincinnati, OH, ³Tufts University School of Medicine, Boston, MA, ⁴The MetroHealth System at Case Western Reserve University School of Medcine, Cleveland, OH, ⁵Pediatric Rheumatology, University of Utah, Salt Lake City, UT, ⁶Institute for Clinical Research and Health Policy Studies (ICRHPS) and CTSI, Tufts School of Medicine, Boston, MA, ⁷Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ⁸The MetroHealth System at Case Western Reserve University School of Medicine, Cleveland, OH
Background/Purpose: Childhood Sjogren Disease (cSjD) is a rare disease that presents with a wide variety of symptoms. Compared to adult SjD, cSjD more frequently manifests…
Abstract Number: 1573 • ACR Convergence 2025
Health-related quality of life over 15 years in systemic sclerosis: impact of sex and survival
Katherine van der Wouden¹, Georgy Gomon², Rachel Knevel², Michel Tsang-A-Sjoe³, Alexandre Voskuijl³ and Jeska de Vries-Bouwstra², ¹Leiden University Medical Center and Amsterdam University Medical Center, Leiden, Zuid-Holland, Netherlands, ²Leiden University Medical Center, Leiden, Netherlands, ³Amsterdam University Medical Center, Amsterdam, Netherlands
Background/Purpose: Patients with systemic sclerosis (SSc) face an uncertain long‑term outlook; understanding how their health‑related quality of life (HRQoL) changes over time can help them…
Abstract Number: 1289 • ACR Convergence 2025
Longitudinal Exploration of Pain and Disease Characteristics in Youth with Childhood-Onset Lupus
Jida Jaffan¹, Tala El Tal², Lawrence Ng³, Asha Jeyanathan⁴, Hunter Hogarth⁵, Adrienne Davis⁴, Linda Hiraki⁵, Deborah Levy⁵, Zahi Touma⁶, Natoshia Cunningham⁷, Ashley Danguecan⁸ and Andrea Knight⁸, ¹The Hospital for Sick Children/ University of Toronto, Toronto, ON, Canada, ²Children's Hospital of Eastern Ontario (CHEO), Ottawa, ON, Canada, ³The Hospital for Sick Children, Toronto, Canada, Toronto, ON, Canada, ⁴The Hospital for Sick Children, Toronto, Canada, ⁵The Hospital for Sick Children, Toronto, ON, Canada, ⁶University of Toronto, Toronto, ON, Canada, ⁷Michigan State University, Grand Rapids, MI, ⁸Hospital for Sick Children, Toronto, ON, Canada
Background/Purpose: Pain is a common symptom in childhood-onset systemic lupus erythematosus (cSLE) which impacts health-related quality of life. Its relationship to disease measures over time…
Abstract Number: 0676 • ACR Convergence 2025
Engineered glove for the objective assessment of hand dexterity in patients with systemic sclerosis: correlations with clinical features, nailfold videocapillaroscopy, and high frequency skin ultrasonography
Alberto Sulli¹, Elvis Hysa², Paolo Clini³, Emanuele Gotelli⁴, Tamara Vojinovic⁵, Carmen Pizzorni¹, Ali Jaffal³, Sabrina Paolino¹, Rosanna Campitiello³, Vanessa Smith⁶ and Maurizio Cutolo³, ¹University of Genoa, Genova, Italy, ²University of Genoa, Genoa, Italy, ³University of Genova, Genova, Italy, ⁴University of Genoa, Genoa, Liguria, Italy, ⁵University of Genoa, Genova, ⁶Ghent University Hospital, Gent, Belgium
Background/Purpose: Hand disability is a major feature of systemic sclerosis (SSc), driven by skin thickening and joint contractures, with significant impact on quality of life.…
Abstract Number: 0393 • ACR Convergence 2025
Effects of Self-Reported Medication Barriers on Medication Adherence and Disease Activity in a Cohort of Patients with Juvenile Idiopathic Arthritis
Aditi Shaily¹, Allison R. Eckard², Paul Nietert³, Emily Vara¹, Natasha Ruth⁴ and Mileka Gilbert³, ¹Division of Rheumatology, Medical University of South Carolina, Charleston, SC, ²Departments of InternDivision of Infectious Diseases, Medical University of South Carolina, Charleston, SC, ³Medical University of South Carolina, Charleston, SC, ⁴Medical University South Carolina, Charleston, SC
Background/Purpose: Medications used to manage juvenile idiopathic arthritis (JIA) are highly effective in preventing joint damage and provide a favorable prognosis. Many patients, however, struggle…
Abstract Number: 0272 • ACR Convergence 2025
Ocular Involvement in Behçet’s Disease: Comparative Study of Two Classification Criteria in Clinical Practice
Rafael Gálvez Sánchez¹, José Luis Martín-Varillas², Lara Sánchez Bilbao³, Ivan Ferraz Amaro⁴, Elena Aurrecoechea⁵ and Ricardo Blanco³, ¹Division of Rheumatology, Hospital Universitario Marqués de Valdecilla, IDIVAL, Immunopathology Group, Santander , Spain, Santander, Spain, ²Rheumatology Division, Hospital de Laredo. IDIVAL, Immunopathology Group. Santander, Spain., Laredo, Spain, ³Rheumatology Division, Hospital Universitario Marqués de Valdecilla, IDIVAL, Immunopathology Group, Santander, Spain, Santander, Cantabria, Spain, ⁴Hospital Universitario de Canarias, Santa Cruz de Tenerife, Spain, ⁵Hospital Sierrallana, CANTABRIA, Spain
Background/Purpose: Ocular involvement is a potential severe complication of Behçet’s Disease (BD). The traditional classification, by the International Study Group (ISG, 1990) requires the mandatory…
Abstract Number: 2624 • ACR Convergence 2025
Results of Large Multi-Site Pragmatic Clinical Trial Comparing Corticosteroids or Blinded Lidocaine-only Injections in Treating Osteoarthritis of the Knee
Joshua Baker¹, Katherine Wysham², Mercedes Quinones³, Bryant England⁴, Kaitian Jin¹, Marianna Olave⁵, Sarah Wetzel⁶, Rachel Gillcrist⁷, Criswell Lavery¹, Natalie Keller⁸, Kimberly Hayes⁹, Bridget Kramer⁴, Hannah Brubeck¹⁰, Bibiana Ateh¹¹, Daniel K. White¹², Alexis Ogdie¹³, Rui Xiao¹, Tuhina Neogi¹⁴ and Carla Scanzello¹, ¹University of Pennsylvania, Philadelphia, PA, ²VA PUGET SOUND/UNIVERSITY OF WASHINGTON, Seattle, WA, ³Washington DC VA Medical Center, Bethesda, MD, ⁴University of Nebraska Medical Center, Omaha, NE, ⁵Brown University, Philadelphia, PA, ⁶Drexel University, Pittsburgh, PA, ⁷Dartmouth College, Lebanon, NH, ⁸University of Oklahoma, Philadelphia, PA, ⁹Teachers College, Columbia University, Philadelphia, PA, ¹⁰VA Puget Sound Health Care System, Seattle, WA, ¹¹Washington VA Medical Center, Washington, District of Columbia, ¹²University of Delaware, Newark, DE, ¹³Department of Medicine, Perelman School of Medicine at the University of Pennsylvania, Wilmington, DE, ¹⁴Boston University School of Medicine, Boston, MA
Background/Purpose: Intra-articular corticosteroids are widely used for routine management of chronic pain from knee osteoarthritis (KOA), though estimates of their benefit vary widely. We aimed…
Abstract Number: 2263 • ACR Convergence 2025
Comparison of a Patient-Reported Disease Activity Measure with Physician-Based Indices in Rheumatoid Arthritis Patients in Nigeria
Uchechukwu Tralagba¹, Courage Uhunmwangho², Olufemi Adelowo³, Henry Nwankwo⁴, Dasetima Altraide¹, Ejiehi Aigbokhan⁵, Ako Itam⁶, Omokhowa Asekhame⁴ and Hakeem Olaosebikan³, ¹University of Port Harcourt Teaching Hospital, Port Harcourt, Rivers, Nigeria, ²Jos University Teaching Hospital, Jos, Plateau, Nigeria, ³Lagos state university teaching hospital, Ikeja, Lagos, Nigeria, ⁴Nnamdi Azikiwe University Teaching Hospital, Nnewi, Anambra, Nigeria, ⁵University of Benin Teaching Hospital, Benin, Edo, Nigeria, ⁶University of Calabar Teaching Hospital, Calabar, Cross River, Nigeria
Background/Purpose: Rheumatoid Arthritis (RA) is a systemic autoimmune disease characterized by chronic inflammation of synovial joints with extra articular manifestations. Disease activity indices in Rheumatoid…
Abstract Number: 1569 • ACR Convergence 2025
Can We Use Patient Reported Outcomes For Home-monitoring in SSc?
Eva Hoekstra¹, Katherine van der Wouden², Queeny Madari¹, Saad Ahmed³, Lianne Kwant¹, Ada Hortensius-Varkevisser¹, Emiel Marges¹, Jacopo Ciaffi⁴, Anne Schouffoer⁵, Tom Huizinga⁶ and Jeska de Vries-Bouwstra⁶, ¹Leiden University Medical Center, Leiden, Zuid-Holland, Netherlands, ²Leiden University Medical Center and Amsterdam University Medical Center, Leiden, Zuid-Holland, Netherlands, ³LUMC, Leiden, Netherlands, ⁴IRCCS Istituto Ortopedico Rizzoli, Bologna, Bologna, Italy, ⁵HagaZiekenhuis the Hague, the Hague, Netherlands, ⁶Leiden University Medical Center, Leiden, Netherlands
Background/Purpose: Home-monitoring is a suitable strategy to reduce the frequency of hospital visits, and alleviate strain on healthcare resources. However, in systemic sclerosis (SSc) this…
Abstract Number: 1278 • ACR Convergence 2025
Differences in Patient and Provider Perception of Functional Status in Adolescents with Lupus
Emily Masi¹, Kimberly Rapoza², Tamar Rubinstein³, Kathy Kenney-Riley⁴ and Joyce Hui-Yuen⁵, ¹Cohen Children's Medical Center, North New Hyde Park, NY, ²Mercy College, Dobbs Ferry, NY, ³Albert Einstein College of Medicine, White Plains, NY, ⁴Mercy University, Dobbs Ferry, NY, ⁵North Shore LIJ Health System, Great Neck, NY
Background/Purpose: Patient and provider discordance can negatively impact medication adherence and disease outcomes in pediatric lupus. Functional status is known to greatly affect perception of…

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