Abstracts tagged "quality of life"

Abstract Number: 0819 • ACR Convergence 2023
Regression to the Mean for Physical Function and Quality of Life in Trials for Symptomatic Knee Osteoarthritis
Martin Englund and Aleksandra Turkiewicz, Lund University, Lund, Sweden
Background/Purpose: Improvement in pain reported in clinical trials for osteoarthritis (OA) is typically strongly depending on the regression-to-the-mean phenomenon. Regression to the mean has been…
Abstract Number: 1368 • ACR Convergence 2023
Development of the Sjögren’s-related Quality of Life (SRQoL) to Assess Health-related Quality of Life (HRQoL) in Sjögren’s
Benjamin A Fisher¹, Linda Stone², Jessica Marvel³, Pushpendra Goswami⁴, Monia Steenackers⁴, Gayle Kenney⁴, Chiara Perella⁵, Wolfgang Hueber⁴, Chloe Howse⁶, Elizabeth Gargon⁶, Aishwarya Chohan⁶, Megan Mayhew⁶ and Nicola Williamson⁶, ¹University of Birmingham, Birmingham, United Kingdom, ²The British Sjogren’s Syndrome Association, Birmingham, United Kingdom, ³Novartis Pharmaceuticals Corporation, East Hanover, NJ, ⁴Novartis Pharma AG, Basel, Switzerland, ⁵Novartis Pharma AG, Riehen, Switzerland, ⁶Adelphi Values Patient-Centered Outcomes, Bollington, United Kingdom
Background/Purpose: Sjögren's is a heterogenous chronic auto-immune disease, characterized by excessive dryness of the eyes and mouth, as well as systemic complications which can significantly…
Abstract Number: 2022 • ACR Convergence 2023
Development of an mHealth App for Lupus: Insights from a Human-Centered Design Approach
Anna Deck¹, Kiran Singh², Lucas Dantas³, Amy LeClair², Lisa Mandl⁴, Timothy McAlindon⁵, Faye Chiu⁶, Monique Gore-Massy⁷ and Shanthini Kasturi², ¹Tufts University School of Medicine, Boston, MA, ²Tufts Medical Center, Boston, MA, ³Ambulomics, Boston, MA, ⁴Hospital for Special Surgery, Weill Cornell Medicine, New York, NY, ⁵Tufts Medical Center, Arlington, MA, ⁶N/A, New York, NY, ⁷Covid-19 GRA, West Orange, NJ
Background/Purpose: Mobile health (mHealth) technology offers promising tools to facilitate the self-management of chronic diseases, including systemic lupus erythematosus (SLE). However, currently available mHealth applications…
Abstract Number: 2556 • ACR Convergence 2023
End-of-Life in Systemic Lupus Erythematosus Beset by Increased Flares and Higher Treatment Burden: Data from a Prospective Large Multinational Cohort
Jiacai Cho¹, Liang Shen², Rangi Kandane-Rathnayake³, Vera Golder³, Worawit Louthrenoo⁴, Yi-Hsing Chen⁵, Laniyati Hamijoyo⁶, Shue-Fen Luo⁷, Yeong-Jian J Wu⁸, Leonid Zamora⁹, Zhanguo Li¹⁰, Sargunan Sockalingam¹¹, Yasuhiro Katsumata¹², Masayoshi Harigai¹², Yanjie Hao¹³, Zhuoli Zhang¹⁴, BMDB Basnayake¹⁵, Madelynn Chan¹⁶, Jun Kikuchi¹⁷, Tsutomu Takeuchi¹⁸, Sang-Cheol Bae¹⁹, Shereen Oon²⁰, Sean O’Neill²¹, Fiona Goldblatt²², Kristine Ng²³, Annie Law²⁴, Nicola Tugnet²⁵, Sunil Kumar²⁶, Cherica Tee²⁷, Michael Tee²⁷, Naoaki Ohkubo²⁸, Yoshiya Tanaka²⁸, Sandra Navarra⁹, Chak Sing Lau²⁹, Alberta Hoi³⁰, Mandana Nikpour³¹, Eric Morand³² and Aisha Lateef³³, ¹National University Hospital, Singapore, Singapore, ²National University of Singapore, Singapore, Singapore, ³Monash University, Department of Medicine, Sub-faculty of Clinical and Molecular Medicine, Clayton, Australia, ⁴Chiang Mai University Hospital, Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Chiang Mai, Thailand, ⁵Taichung Veterans General Hospital, Taichung, Taiwan, ⁶Padjadjaran University/Hasan Sadikin General Hospital, Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Bandung, Indonesia, ⁷Chang Gung University, Department of Rheumatology, Allergy and Immunology, Chang Gung Memorial Hospital, Taoyuan, Taiwan, ⁸Chang Gung University, Department of Rheumatology, Allergy and Immunology, Chang Gung Memorial Hospital, Keelung, Taiwan, ⁹University of Santo Tomas Hospital, Joint and Bone Center, Manila, Philippines, ¹⁰Peking University People’s Hospital, Beijing, China, ¹¹University of Malaya, Department of Medicine, Faculty of Medicine Building, Kuala Lumpur, Malaysia, ¹²Tokyo Women's Medical University, Division of Rheumatology, Department of Internal Medicine, Tokyo, Japan, ¹³The University of Melbourne Department of Medicine at St Vincents Hospital Melbourne, Melbourne, Australia, ¹⁴Peking University First Hospital, Rheumatology and Immunology Department, Beijing, China, ¹⁵Division of Nephrology, Teaching Hospital Kandy, Adelaide, Australia, ¹⁶Tan Tock Seng Hospital, Department of Rheumatology, Allergy & Immunology, Singapore, Singapore, ¹⁷Keio University, Keio, Japan, ¹⁸Keio University School of Medicine and Saitama Medical University, Tokyo, Japan, ¹⁹Hanyang University Hospital for Rheumatic Diseases and Hanyang University Institute for Rheumatology Research, Department of Rheumatology, Seoul, South Korea, ²⁰Department of Medicine, The University of Melbourne at St Vincent’s Hospital, Melbourne, Australia, ²¹Department of Medicine, University of New South Wales, Kensington, Australia, ²²Royal Adelaide Hospital and Flinders Medical Centre, Adelaide, Australia, ²³Waitemata DHB, Auckland, New Zealand, ²⁴Singapore General Hospital; Duke-NUS Medical School, Singapore, Singapore, ²⁵Auckland District Health Board, Auckland, New Zealand, ²⁶Middlemore Hospital, Auckland, New Zealand, ²⁷University of the Philippines, Manila, Philippines, ²⁸University of Occupational and Environmental Health, Kitakyushu, Japan, ²⁹University of Hong Kong, Division of Rheumatology & Clinical Immunology, Department of Medicine, Queen Mary Hospital, Hong Kong, Hong Kong, ³⁰Monash University, Department of Medicine, Sub-faculty of Clinical and Molecular Medicine, Melbourne, Australia, ³¹The University of Melbourne at St. Vincent’s Hospital Melbourne, Departments of Medicine and Rheumatology, Melbourne, Australia, ³²Monash University, Centre for Inflammatory Diseases, Melbourne, Australia, ³³National University Hospital, Rheumatology Division, Department of Medicine, Singapore, Singapore
Background/Purpose: SLE patients suffer high symptom burden at the end-of-life. However, the course of disease and treatment burden in the last year of life have…
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: 0444 • ACR Convergence 2022
Prevalence of Frailty and Associated Factors in Patients with Vasculitis
Sebastian Sattui¹, John Stadler², Cristina Burroughs³, Kalen Larson², Christine Yeung⁴, Peter Merkel⁵ and Robert Spiera⁶, ¹University of Pittsburgh, Pittsburgh, PA, ²Vasculitis Foundation, Kansas City, MO, ³University of South Florida, Tampa, FL, ⁴University of Pennsylvania, Philadelphia, ⁵University of Pennsylvania, Philadelphia, PA, ⁶Hospital for Special Surgery, New York, NY
Background/Purpose: Frailty is a syndrome characterized by an increased vulnerability to stressors and is associated with disability and early mortality. Frailty may be accelerated in…
Abstract Number: 1495 • ACR Convergence 2022
How Does Body Mass Index Affect Secukinumab Treatment Outcomes and Safety in Patients with Ankylosing Spondylitis? – Real World Data from a German Observational Study
Uta Kiltz¹, Jan Brandt-Juergens², Peter Kästner³, Elke Riechers⁴, Daniel Peterlik⁵, Christina Budden⁵ and Hans-Peter Tony⁶, ¹Rheumazentrum Ruhrgebiet, Herne, Germany, ²Rheumatologische Schwerpunktpraxis, Berlin, Germany, ³Ambulantes Rheumazentrum, Medizinisches Versorgungszentrum, Erfurt, Germany, ⁴Medizinische Hochschule Hannover, Hannover, Germany, ⁵Novartis Pharma GmbH, Nürnberg, Germany, ⁶Medizinische Klinik II - Rheumatologie/Immunologie, Universitätsklinikum Würzburg, Würzburg, Germany
Background/Purpose: Obesity is a risk factor for worse overall health in people with ankylosing spondylitis (AS)1. The German non-interventional study AQUILA provides real-world data in…
Abstract Number: PP04 • ACR Convergence 2022
Invisible to Invincible: The Role of Virtual Events in Autoimmune Advocacy, Education and Community Building
Kara Wada, The Ohio State University, Columbus, OH
Background/Purpose: After years of ignoring my dry eyes and mouth, unrelenting fatigue, and body pain, an off-the-cuff comment from my dental hygienist finally pushed me…
Abstract Number: 0729 • ACR Convergence 2022
Understanding the Practice and Process of Patient Reported Outcome Measures Collection in North American Pediatric Rheumatology Clinics: A Survey of the Pediatric Rheumatology-Care and Outcomes Improvement Network
Y. Ingrid Goh¹, Esi Morgan², Meghan Ryan³, Beth Gottlieb⁴ and Nancy Pan⁵, ¹Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute, Toronto, ON, Canada, ²Seattle Children's Hospital, Seattle, WA, ³University of Minnesota, Vadnais Heights, MN, ⁴Cohen Children's Medical Center, Lake Success, NY, ⁵Hospital for Special Surgery, New York, NY
Background/Purpose: Patients/proxies (Pts) complete patient reported outcome measures (PROMs) to inform their healthcare team about their health status. PROMs completed by Pts prior to their…
Abstract Number: 1507 • ACR Convergence 2022
Diagnostic Delay of More Than 6 Months Contributes to Poor Patient-Reported Outcome Measures in Psoriatic Arthritis
Neel Tapryal¹, George Gondo², M. Elaine Husni³, Alice Gottlieb⁴ and Joseph Merola⁵, ¹Cleveland Clinic, Rocky River, OH, ²National Psoriasis Foundation, Portland, OR, ³Cleveland Clinic, Cleveland, OH, ⁴Department of Dermatology, The Icahn School of Medicine at Mount Sinai, New York, NY, ⁵Harvard Medical School, Brigham and Women's Hospital, Boston, MA
Background/Purpose: Psoriatic arthritis (PsA) is a type of inflammatory arthritis in which the time between symptom onset and a diagnosis of PsA is highly variable.…
Abstract Number: PP05 • ACR Convergence 2022
From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease
Cheryl Crow¹ and Zoe Rothblatt², ¹Arthritis Life, Bellevue, WA, ²Global Healthy Living Foundation, New York, NY
Background/Purpose: Living with different autoimmune rheumatic diseases, we (Cheryl and Zoe) share similar struggles with disease management, and successes in learning new ways to use…
Abstract Number: 0739 • ACR Convergence 2022
Effect of Tailored Self-Management Interventions on Health Outcomes in Individuals with Chronic Musculoskeletal Conditions
Ellen Wang¹, Isabel Rodrigues² and Linda Li³, ¹University of British Columbia, Arthritis Research Canada, Vancouver, BC, Canada, ²McMaster University, GERAS Centre for Aging Research, Hamilton, ON, Canada, ³University of British Columbia, Vancouver, BC, Canada
Background/Purpose: Self-management, has been recognized as an essential component of successful chronic musculoskeletal (MSK) management; yet existing reviews of self-management interventions have found only modest…

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