Abstracts tagged "quality of life"

Abstract Number: 0333 • ACR Convergence 2023
Ankylosing Spondylitis Patient Perspective on Living with Flares and Impact on Quality of Life
Heather Lapidus Glassner and Elizabeth Luce, MyHealthTeam, San Francisco, CA
Background/Purpose: Ankylosing spondylitis (AS) leads to symptoms of pain, stiffness, swelling, and fatigue. Patients often report periods of increased symptoms (flares) followed by remission.The purpose…
Abstract Number: 0683 • ACR Convergence 2023
Remission, Glucocorticoid Toxicity, Health-Related Quality of Life, and Safety Outcomes in Patients with Renal Involvement in the Phase 3 Trial of Avacopan for the Treatment of ANCA-Associated Vasculitis
Duvuru Geetha¹, Frank Cortazar², Annette Bruchfeld³, alexandre Karras⁴, Peter Merkel⁵ and David Jayne⁶, ¹Johns Hopkins University, Baltimore, MD, ²New York Nephrology, Watervliet, NY, ³Karolinska Institutet, Stockholm, Sweden, ⁴HEGP - APHP, Paris, France, ⁵University of Pennsylvania, Philadelphia, PA, ⁶University of Cambridge, Cambridge, United Kingdom
Background/Purpose: In the Phase 3 ADVOCATE trial comparing avacopan to a prednisone taper, 81% of patients with ANCA-associated vasculitis (AAV) had renal involvement based on…
Abstract Number: 1354 • ACR Convergence 2023
The Impact of Pregnancy Intention on Depression and Quality of Life in Women with Lupus
Ceshae Harding¹, Amanda Eudy², Catherine Sims¹, Cuoghi Edens³, Mehret Birru Talabi⁴, Rosalind Ramsey-Goldman⁵, Laura Neil¹ and Megan Clowse⁶, ¹Duke University, Durham, NC, ²Duke University, Raleigh, NC, ³University of Chicago, Chicago, IL, ⁴University of Pittsburgh, Pittsburgh, PA, ⁵Northwestern University, Chicago, IL, ⁶Duke University, Chapel Hill, NC
Background/Purpose: Mental health conditions are the leading cause of maternal mortality across most of the United States. Among individuals with SLE, pregnancy intention has been…
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: 0337 • ACR Convergence 2023
Impact of Photosensitivity on Quality of Life in Dermatomyositis
Kirubel Gebre¹, Rachita Pandya², Julianne Kleitsch², Darosa Lim³, Rui Feng³ and victoria werth⁴, ¹Perelman School of Medicine at the University of Pennsylvania, Lancaster, PA, ²Philadelphia VAMC, Philadelphia, PA, USA and Department of Dermatology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, ³University of Pennsylvania, Philadelphia, PA, ⁴University of Pennsylvania, Wynnewood, PA
Background/Purpose: Photosensitivity (PS) has been documented in dermatomyositis (DM) with symptoms including aggravation of preexisting cutaneous lesions and abnormal transient erythemal responses (Cheong WK et…
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: 2029 • ACR Convergence 2023
Health-Related Quality of Life in Idiopathic Inflammatory Myopathies: How to Act for Improving the Disease Burden of Patients?
Chiara Cardelli¹, Simone Barsotti², Elenia Laurino¹, Michele Diomedi¹, Federico Fattorini¹, Dina Zucchi³, Alessandra Tripoli¹, Linda Carli¹ and Marta Mosca¹, ¹Rheumatology Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy, ²Internal Medicine, Ospedale di Livorno, Pisa, Italy, ³Rheumatology Unit, Department of Clinical and Experimental Medicine, University of Pisa, Italy; Department of Medical Biotechnologies, University of Siena, Pisa, Italy
Background/Purpose: Idiopathic Inflammatory Myopathies (IIM) are rare, multisystemic and complex diseases that strongly impact the Quality of Life (QoL) of those affected. Patient Reported Outcomes…
Abstract Number: 2579 • ACR Convergence 2023
Validation of PROMIS in Adult and Pediatric Patients with Idiopathic Inflammatory Myopathies
Emma Austenfeld¹, Sara Sabbagh¹, Melodee Liegl¹, Ke Yan¹, Julie Fuller², Kelly Rouster-Stevens³, Lisa Rider⁴ and Adam Schiffenbauer⁴, ¹Medical College of Wisconsin, Wauwatosa, WI, ²UT Southwestern and Scottish Rite for Children, Dallas, TX, ³Emory University/Children's Healthcare of Atlanta, Norcross, GA, ⁴NIEHS, NIH, Bethesda, MD
Background/Purpose: This study aimed to validate the Patient Reported Outcome Measurement Information System (PROMIS) tools in patients with adult and juvenile idiopathic inflammatory myopathies (IIM/JIIM)…
Abstract Number: 0339 • ACR Convergence 2023
Longitudinal Glucocorticoid Toxicity in Rheumatic Disease Patients (LONG-TOX) and Associations with Quality of Life and Healthcare Resource Utilization: Interim Analysis from a Prospective Cohort
Naomi Patel¹, Aubree McMahon¹, Grace McMahon¹, Sebastian Perez-Espina¹, Isha Jha¹, Adam Jarvie¹ and John Stone², ¹Massachusetts General Hospital, Boston, MA, ²Massachusetts General Hospital Rheumatology Unit, Harvard Medical School, Concord, MA
Background/Purpose: Glucocorticoids (GCs) continue to be the cornerstone of therapy for many rheumatic diseases, though long-term exposure to GCs has been linked to dozens of…
Abstract Number: 0827 • ACR Convergence 2023
Development and Initial Validation of a Brief Measure of Uncertainty in Rheumatic Disease
Caleb Bolden¹, Claire Cook¹, Lucy Finkelstein-Fox¹, Xiaoqing Fu¹, Flavia Castelino¹, Hyon K. Choi², Cory Perugino¹, John Stone³, Elyse Park¹, Zachary Wallace⁴ and Daniel Hall¹, ¹Massachusetts General Hospital, Boston, MA, ²Massachusetts General Hospital and Harvard Medical School, Lexington, MA, ³Massachusetts General Hospital Rheumatology Unit, Harvard Medical School, Concord, MA, ⁴Massachusetts General Hospital, Newton, MA
Background/Purpose: Patients with systemic autoimmune rheumatic disease (SARD) are often tasked with monitoring ambiguous and unpredictable physical symptoms on their own. Higher levels of uncertainty…
Abstract Number: 1378 • ACR Convergence 2023
The UCSD Shortness of Breath Questionnaire Is a Useful Tool for the Assessment of Dyspnea in Primary Sjögren’s Syndrome Patients with Interstitial Lung Disease: A Monocentric Cross-Sectional Study
Gaetano La Rocca¹, Francesco Ferro², Elena Elefante³, Silvia Fonzetti⁴, Giovanni Fulvio⁵, Inmaculada Conception Navarro Garcia³, Chiara Romei⁶, Marta Mosca³ and Chiara Baldini⁵, ¹University of Pisa, Rheumatology Unit, Pisa, Italy, ²Clinical and Experimental Medicine Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy, ³Rheumatology Unit, Department of clinical and experimental medicine, University of Pisa, Pisa, Italy, ⁴AOUP, Pisa, Italy, ⁵University of Pisa, Pisa, Italy, ⁶Department of Diagnostic Imaging, Diagnostic Radiology 2, Pisa University Hospital, Pisa, Italy
Background/Purpose: In clinical trials investigating new drugs for the management of Interstitial Lung Disease (ILD) patient reported outcomes (PRO) are increasingly employed as outcome measures…
Abstract Number: 2035 • ACR Convergence 2023
Intimate Partner Violence Is Associated with a Poorer Health-Related Quality of Life (HR-QoL) in Women with Systemic Lupus Erythematous
Emmanuel Campos-Tinajero¹, Griselda Serna-Peña², Jorge A. Esquivel-Valerio¹, Rodrigo J. Castillo-de la Garza³, Gisela García Arellano⁴, Pablo Gamez-Siller¹, Estefania Aguilar-Rivera⁵, Patricia L. Gonzalez-Garcia¹ and Dionicio A. Galarza-Delgado⁶, ¹Hospital Universitario "Dr. José Eleuterio González", Monterrey, Mexico, ²Universidad Autónoma de Nuevo León, Guadalupe, Mexico, ³Universidad Autónoma de Nuevo León, Monterrey, Mexico, ⁴Hospital Universitario "Dr. José Eleuterio González", Monterrey, Mexico, ⁵Hospital Universitario "Dr. José Eleuterio González", Universidad Autónoma de Nuevo León, Monterrey, Mexico, ⁶Hospital Universitario UANL, Monterrey, Mexico
Background/Purpose: Systemic lupus erythematosus (SLE) is an inflammatory, multisystemic, chronic disease more prevalent in women and can significantly impact health-related quality of life (HRQoL).1 Sociodemographic…
Abstract Number: PP03 • ACR Convergence 2023
Lupus with Slime: Improve QOL and Increase ROM in SLE with Slime
Amanda Greene, Los Angeles, CA
Background/Purpose: In 1983, over forty years ago, I was diagnosed with Systemic Lupus Erythematosus (SLE). I was immediately prescribed high dose corticosteroids. My body and…

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