Abstracts tagged "quality of life"

Abstract Number: 0620 • ACR Convergence 2023
Physical and Mental Health in Early Systemic Sclerosis: Baseline Results for Patient-Reported Outcomes Measurement Information System-29 from the Collaborative National Quality and Efficacy Registry
Isha Lamba¹, Ashima Makol², Dinesh Khanna³, John VanBuren⁴, Angela Child⁴, Jessica Alvey⁴, Shervin Assassi⁵, Elana Bernstein⁶, Flavia Castelino⁷, Lorinda Chung⁸, Luke Evnin⁹, Tracy Frech¹⁰, Faye Hant¹¹, Laura Hummers¹², Kimberly Lakin¹³, Dorota Lebiedz-Odrobina¹⁴, Yiming Luo¹⁵, Jerry Molitor¹⁶, Duncan Moore¹⁷, Carrie Richardson¹⁸, Nora Sandorfi¹⁹, Ami Shah²⁰, Ankoor Shah²¹, Victoria Shanmugam²², Brian Skaug²³, Virginia Steen²⁴, Elizabeth Volkmann²⁵ and Jessica Gordon¹³, ¹New York Presbyterian Hospital/Weill Cornell Medical Centre, New York, NY, ²Mayo Clinic, Rochester, MN, Rochester, MN, ³University of Michigan, Ann Arbor, MI, ⁴University of Utah, Salt Lake City, UT, ⁵University of Texas McGovern Medical School at Houston, Houston, TX, ⁶Columbia University, New York, NY, ⁷Massachusetts General Hospital, Boston, MA, ⁸Department of Medicine, Division of Immunology and Rheumatology, Stanford University School of Medicine, Woodside, CA, ⁹Scleroderma Research Foundation, Brisbane, CA, ¹⁰Vanderbilt University Medical Center, Nashville, TN, ¹¹Medical University of South Carolina, Charleston, SC, ¹²Johns Hopkins University, Baltimore, MD, ¹³Hospital for Special Surgery, New York, NY, ¹⁴University of Utah, Cottonwood Heights, UT, ¹⁵Division of Rheumatology, Department of Medicine, Columbia University Irving Medical Center, New York, NY, ¹⁶University of Minnesota, Minneapolis, MN, ¹⁷Northwestern Memorial Hospital, Chicago, IL, ¹⁸Northwestern University, Riverside, IL, ¹⁹University of Pennsylvania, Philadelphia, PA, ²⁰Department of Medicine, Division of Rheumatology, Johns Hopkins University School of Medicine, Ellicott City, MD, ²¹Duke University, Durham, NC, ²²Victoria Shanmugam, MD, Great Falls, VA, ²³Division of Rheumatology, University of Texas McGovern Medical School, Houston, TX, ²⁴Georgetown University School of Medicine, Washington, DC, ²⁵University of California Los Angeles, Los Angeles, CA
Background/Purpose: Patient-Reported Outcomes Measurement Information System-29 version 2.0 (PROMIS-29v2) is a patient-centered questionnaire used to assess health-related quality of life (HRQoL). PROMIS-29v2 has shown validity…
Abstract Number: 1216 • ACR Convergence 2023
“I Call It Zombie Hands and Feet, That’s Actually How I Found out I Had This Disease”: Disease Symptoms and Treatment Side Effects in a Diverse Sample of Patients with Early Limited Cutaneous and Diffuse Cutaneous Systemic Sclerosis
Chelsea Perschon¹, Emilie Jaeger¹, George Greene¹, Alain Lescoat², Yen Chen³, Susan Murphy³, Sara Shaunfield¹, David Cella¹ and Dinesh Khanna³, ¹Northwestern University Feinberg School of Medicine, Chicago, IL, ²University Rennes, Rennes, France, ³University of Michigan, Ann Arbor, MI
Background/Purpose: Systemic sclerosis (SSc) is a multisystem autoimmune rheumatic disease with heterogeneous manifestations, including common symptoms such as pain, fatigue, dyspnea, and Raynaud's phenomenon. It…
Abstract Number: 1925 • ACR Convergence 2023
Importance of the Patient Pain Experience in Disease Activity Assessment in the Adult SAPHO and Chronic Nonbacterial Osteomyelitis Study
Aleksander Lenert¹, Robyn Domsic², Karmela Kim Chan³, Melissa Oliver⁴, Jisna Paul⁵, Courtney Kremer⁶, Emma Leisinger¹, Helena Abodeely¹, Sandy Hong⁶, Arundathi Jayatilleke⁷, Petar Lenert⁸, T. Shawn Sato¹, Yongdong (Dan) Zhao⁹, Jonathan Templin¹, Mary Vaughan-Sarrazin¹, Daniel Solomon¹⁰ and Polly Ferguson¹¹, ¹University of Iowa, Iowa City, IA, ²University of Pittsburgh, Pittsburgh, PA, ³Hospital For Special Surgery, New York, NY, ⁴Indiana University, Indianapolis, IN, ⁵Ohio State University Hospital, Columbus, OH, ⁶University of Iowa Stead Family Children's Hospital, Iowa City, IA, ⁷Temple University, Philadelphia, PA, ⁸University of Iowa Hospitals and Clinics, Iowa City, IA, ⁹University of Washington, Seattle, WA, ¹⁰Brigham and Women's Hospital, Boston, MA, ¹¹University of Iowa Carver College of Medicine, Iowa City, IA
Background/Purpose: Musculoskeletal pain is a key symptom experienced by patients with SAPHO and chronic nonbacterial osteomyelitis (SAPHO-CNO), yet its relation to disease activity assessment remains…
Abstract Number: 2276 • ACR Convergence 2023
Patient Reported Impact of Lupus on Quality of Life
Beth Schneider, MyHealthTeam, San Francisco, CA
Background/Purpose: Research was undertaken to better understand how people living with lupus describe its sum total impact on their lives including work, challenges with relationships…
Abstract Number: 0285 • ACR Convergence 2023
Patient Reported Physical Function, Mental Health, and Treatment Patterns in Dermatomyositis
Lisa Christopher-Stine¹, Julie Paik¹, Brendan M. Johnson², Taryn Smith², Jolie Feldman² and Paul N. Mudd Jr.², ¹Johns Hopkins University, Baltimore, MD, ²Priovant Therapeutics, Durham, NC
Background/Purpose: Dermatomyositis (DM) is a rare, debilitating, idiopathic inflammatory myopathy characterized by painful, itchy skin rash and proximal muscle weakness that can significantly impact daily…
Abstract Number: 0630 • ACR Convergence 2023
Prevalence and Risk Factors for Systemic Sclerosis Digital Ischemic Complications in the Collaborative National Quality and Efficacy Registry
Marissa Savoie¹, Monica Harding², Jessica Alvey², John VanBuren², Shervin Assassi³, Elana Bernstein⁴, Lorinda Chung⁵, Luke Evnin⁶, Tracy Frech⁷, Jessica Gordon⁸, Faye Hant⁹, Laura Hummers¹⁰, Dinesh Khanna¹¹, Kimberly Lakin⁸, Dorota Lebiedz-Odrobina¹², Yiming Luo¹³, Ashima Makol¹⁴, Jerry Molitor¹⁵, Duncan Moore¹⁶, Carrie Richardson¹⁷, Nora Sandorfi¹⁸, Ami Shah¹⁹, Ankoor Shah²⁰, Brian Skaug²¹, Virginia Steen²², Elizabeth Volkmann²³ and Flavia Castelino¹, ¹Massachusetts General Hospital, Boston, MA, ²University of Utah, Salt Lake City, UT, ³University of Texas McGovern Medical School at Houston, Houston, TX, ⁴Division of Rheumatology, Department of Medicine, Vagelos College of Physicians and Surgeons, Columbia University Irving Medical Center, New York, NY, ⁵Department of Medicine, Division of Immunology and Rheumatology, Stanford University School of Medicine, Woodside, CA, ⁶Scleroderma Research Foundation, Brisbane, CA, ⁷Vanderbilt University Medical Center, Nashville, TN, ⁸Hospital for Special Surgery, New York, NY, ⁹Medical University of South Carolina, Charleston, SC, ¹⁰Johns Hopkins University, Baltimore, MD, ¹¹University of Michigan, Ann Arbor, MI, ¹²University of Utah, Cottonwood Heights, UT, ¹³Division of Rheumatology, Department of Medicine, Columbia University Irving Medical Center, New York, NY, ¹⁴Mayo Clinic, Rochester, MN, Rochester, MN, ¹⁵University of Minnesota, Minneapolis, MN, ¹⁶Northwestern University, Department of Rheumatology, Chicago, IL, ¹⁷Northwestern University, Chicago, IL, ¹⁸University of Pennsylvania, Philadelphia, PA, ¹⁹Department of Medicine, Division of Rheumatology, Johns Hopkins University School of Medicine, Ellicott City, MD, ²⁰Duke University, Durham, NC, ²¹Division of Rheumatology, University of Texas McGovern Medical School, Houston, TX, ²²Georgetown University School of Medicine, Washington, DC, ²³University of California Los Angeles, Los Angeles, CA
Background/Purpose: Digital ischemic ulcers (DIU) develop in 36-44% of patients with systemic sclerosis (SSc).1,2Prior international observational studies have evaluated characteristics of digital pitting and ulcers…
Abstract Number: 1217 • ACR Convergence 2023
Sex Differences in Perceptions of Psoriatic Arthritis Disease Impact, Management, and Physician Interactions: Results from a Global Patient Survey
Lihi Eder¹, Pascal Richette², Laura Coates³, Valderilio Feijó Azevedo⁴, Joseph C. Cappelleri⁵, Megan Hoang⁶, Jade Moser⁷ and Meriem Kessouri⁸, ¹Women’s College Research Institute, Division of Rheumatology, University of Toronto, Toronto, ON, Canada, ²Lariboisière Hospital, Paris, France, ³University of Oxford, Oxford, United Kingdom, ⁴Department of Internal Medicine, Hospital de Clínicas at the Federal University of Paraná, Curitiba, Paraná, Brazil, ⁵Pfizer Inc., Groton, CT, ⁶Pfizer Inc., New York, NY, ⁷The Harris Poll, Rochester, NY, ⁸Pfizer Inc., Paris, France
Background/Purpose: Women with PsA have more severe disease activity and lower health-related quality of life vs men.1 This post hoc analysis assessed sex differences in…
Abstract Number: 1958 • ACR Convergence 2023
Validity, Responsiveness and Minimal Clinically Important Difference of EQ-5D-5L in Inflammatory Myositis: A Longitudinal Study
Chengappa Kavadichanda¹, Parthibane S¹, Mamatha Gorijavolu¹, Sai Kumar Dunga¹, Amrita Nayak¹, Sitanshu Sekhar¹ and Rohit Aggarwal², ¹Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry, India, ²University of Pittsburgh, Pittsburgh, PA
Background/Purpose: Idiopathic inflammatory myositis (IIM) significantly impacts health-related quality of life (HRQoL). EQ5D-5L is a widely used and validated tool to measure HRQoL. The health…
Abstract Number: 2296 • ACR Convergence 2023
Association Between EQ-5D-5L and SLEDAI Scores in Patients with Systemic Lupus Erythematosus in the United States and Europe: A Real-world Survey
Ebuwa Igho-Osagie¹, Rezaul Khandker¹, Jack Milligan², Emily Goddard² and Sophie Barlow², ¹Merck & Co. Inc., Rahway, NJ, ²Adelphi Real World, Bollington, United Kingdom
Background/Purpose: The EQ-5D-5L is validated for estimating health related quality of life (HRQoL) across a variety of different disease areas, including rheumatic diseases. However, its…
Abstract Number: 026 • 2023 Pediatric Rheumatology Symposium
Performance of the UCLA Scleroderma Clinical Trials Consortium Gastrointestinal Tract 2.0 Instrument in a Juvenile Systemic Sclerosis Cohort
Sophie Stefancic, Amanda Robinson, Haley Havrilla, Samantha Branton, Vibha Sood and Kathryn Torok, University of Pittsburgh, Pittsburgh, PA
Background/Purpose: Gastrointestinal (GI) manifestations in juvenile onset systemic sclerosis (jSSc) reflect adult disease with a range of involvement along the GI tract, including oropharyngeal dysphagia…
Abstract Number: 030 • 2023 Pediatric Rheumatology Symposium
International Validation of the Total Morbidity Score for Juvenile Localized Scleroderma: 2023 Update
Christina ZIgler¹, Debra Henke², Clare Pain³, Hanna Lythgoe³, Kaveh Ardalan², Kathryn Torok⁴ and Suzanne Li⁵, ¹Duke, Durham, NC, ²Duke University School of Medicine, Durham, NC, ³Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom, ⁴University of Pittsburgh, Pittsburgh, PA, ⁵Hackensack Meridian School of Medicine, Joseph M. Sanzari Children's Hospital, Hackensack, NJ
Background/Purpose: Juvenile localized scleroderma (jLS) is a rare condition causing inflammation and fibrosis that may impair health-related quality of life (HRQoL). Recent studies demonstrate extracutaneous…
Abstract Number: 042 • 2023 Pediatric Rheumatology Symposium
Prevalence of Chronic Pain in Childhood-onset Systemic Lupus Erythematosus and Juvenile Dermatomyositis
Sara Patrizi¹, Susmita Kashikar-Zuck², CARRA Registry Investigators³, Mekibib Altaye⁴ and Jennifer Weiss⁵, ¹Stanford Medicine, Children's Health, Palo Alto, CA, ²University of Cincinnati College of Medicine; Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ³CARRA, Washington, DC, ⁴Cincinnati Children's Hospital, Cincinnati, OH, ⁵Pediatric Rheumatology, Hackensack Meridian School of Medicine, Hackensack University Medical Center, Hackensack, New Jersey, Hackensack, NJ
Background/Purpose: The prevalence, severity and impact of chronic pain in pediatric patients with autoimmune diseases such as childhood onset SLE (cSLE) and juvenile dermatomyositis (JDM)…
Abstract Number: 052 • 2023 Pediatric Rheumatology Symposium
Extreme Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis (PFAPA): A Discrete Group of Patients
Yoel Levinsky¹, Rotem Tal², Liora Harel², Shoval Shoham³, Sabreen Abu Ahmad⁴, Yonatan Butbul Aviel⁵, Gil Amarilyo² and Mor Broide³, ¹Schneider Children's Medical Center of Israel, Petach Tikva, Israel, ²Pediatric rheumatology clinic, Schneider children's medical center of Israel, Petach Tikva, Israel, ³Schneider Children's Medical Center of Israel, Petach Tikva, Israel, ⁴Ruth Rappaport Children's Hospital, Rambam Health Care, Haifa, Israel, ⁵Rambam Medical center, Haifa, Israel
Background/Purpose: Periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis (PFAPA) syndrome is the most common periodic fever syndrome in children; by definition, episodes occur every…
Abstract Number: 0410 • ACR Convergence 2022
Achieving Increasingly Stringent Clinical Response Criteria & Lower Levels of Disease Activity Is Associated with Greater Improvements in Physical Function & HRQoL in Patients with Active Axial Spondyloarthritis: 16-Week Results from Two Phase 3 Randomized, Placebo-Controlled Studies
Marina Magrey¹, Atul Deodhar², Philip J Mease³, Victoria Navarro-Compán⁴, Sofia Ramiro⁵, Martin Rudwaleit⁶, Christine de la Loge⁷, Carmen Fleurinck⁸, Vanessa Taieb⁹, Michael Frank Mørup¹⁰, Marga Oortgiesen¹¹ and Jonathan Kay¹², ¹Case Western Reserve University, University Hospitals, Richfield, OH, ²Oregon Health & Science University, Portland, OR, USA, Portland, OR, ³Swedish Medical Center/Providence St. Joseph Health, Seattle, WA, ⁴Department of Rheumatology, La Paz University Hospital, IdiPaz, Madrid, Spain, ⁵Leiden University Medical Center, Leiden, Netherlands, ⁶University of Bielefeld, Klinikum Bielefeld, Bielefeld; Germany Klinikum Bielefeld and Charité Berlin, Germany, and Gent University, Gent, Belgium, ⁷UCB Pharma, Brussels, Belgium, ⁸UCB Pharma, Brussels, Belgium, Oosterzele, Belgium, ⁹UCB Pharma, Colombes, France, ¹⁰UCB Pharma, Copenhagen, Denmark, ¹¹UCB Pharma, Raleigh, NC, ¹²Division of Rheumatology, Department of Medicine, UMass Chan Medical School and UMass Memorial Medical Center, Worcester, MA
Background/Purpose: Examine the association between achieving increasingly stringent clinical response criteria and lower levels of disease activity, and improvements in physical function and health-related quality…
Abstract Number: 1347 • ACR Convergence 2022
Poor Health-Related Quality of Life in Patients with Lupus Nephritis
Cristina Arriens¹, Janice Ma², Konrad Pisarczyk², Richard Leff³, Kiruthi Palaniswamy⁴ and Li Long⁴, ¹Oklahoma Medical Research Foundation, Oklahoma City, OK, ²Maple Health Group, LLC, New York, NY, ³Kezar Life Sciences, South San Francisco, CA, ⁴Kezar Life Sciences, Inc., South San Francisco, CA
Background/Purpose: Lupus nephritis (LN) is one of the most serious manifestations of systemic lupus erythematosus (SLE) associated with considerable morbidity that has a devastating impact…

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