Abstracts tagged "Surveys"

Abstract Number: 2027 • ACR Convergence 2023
Developing and Implementing a Pilot Educational Intervention to Improve Readiness for Self-Management Among Patients with Rheumatic Diseases in Uganda
Trina Pal¹, Auther Jjunju², joshua bilsborrow³, Lillian Tugume⁴, Rachel Galvao³, Evelyn Hsieh⁵ and Mark Kaddumukasa⁴, ¹Section of Rheumatology, Yale School of Medicine, West Hartford, CT, ²The Arthritis Association of Uganda, Kampala, Uganda, ³Section of Rheumatology, Yale School of Medicine, New Haven, CT, ⁴Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda, ⁵Yale University, Department of Medicine, Section of Rheumatology; Yale School of Public Health; Section of Rheumatology, VA Connecticut Healthcare System, Westport, CT
Background/Purpose: Self-management is an effective strategy for improving health outcomes among patients with chronic conditions such as rheumatic diseases. Patient education about self-management among patients…
Abstract Number: 006 • 2023 Pediatric Rheumatology Symposium
Implementation of Automated Depression Screening in Patients with Lupus in a Tertiary Pediatric Rheumatology Clinic
Lauren Harper¹, Alana Goldstein-Leever¹, James Gallup¹, Vidya Sivaraman², Stacy Ardoin¹, Kyla Driest¹, Evan Mulvhihill³ and Alysha Taxter⁴, ¹Nationwide Children's Hospital, Columbus, OH, ²Nationwide Children's Hospital/ The Ohio State University, Columbus, OH, ³Nemours Children's Hospital, ⁴Nationwide Children's Hospital, Columbus, OH

Background/Purpose: Patients with chronic rheumatic conditions, particularly lupus, have higher rates of depression, which significantly impacts their lives and can lead to poor medication compliance…
Abstract Number: 022 • 2023 Pediatric Rheumatology Symposium
Narrative Medicine and Pediatric Rheumatology: Addressing Burnout and Bias
aviya lanis, Natalie Rosenwasser and Esi Morgan, Seattle Children's Hospital, Seattle, WA
Background/Purpose: Burnout, a syndrome of emotional exhaustion and depersonalization, adversely impacts healthcare. This can result in mood disturbances, poor patient and provider satisfaction and high…
Abstract Number: 061 • 2023 Pediatric Rheumatology Symposium
Variation in Treatment Approaches to IVIG- Refractory Kawasaki Disease (KD) Among Pediatric Rheumatologists: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) Treatment of Refractory KD Survey
Daniel Ibanez¹, Bianca Lang², Ali Yalcindag³, Linda Wagner-Weiner⁴, Julia Shalen⁵, Kenneth Schikler⁶, Shoghik Akoghlanian⁷, Hulya Bukulmez⁸, Kristen Hayward⁹, Sivia Lapidus¹⁰, Andrea Ramirez¹¹, Robert Sundel¹, Cagri Yildirim-Toruner¹² and CARRA Registry Investigators¹³, ¹Boston Children's Hospital, Boston, MA, ²Dalhousie University - Halifax, Halifax, NS, Canada, ³Hasbro Children's Hospital, Milton, MA, ⁴The University of Chicago, Chicago, IL, ⁵Johns Hopkins University, Baltimore, MD, ⁶University of Louisville School of Medicine Norton Children's Hospital, Louisville, KY, ⁷Nationwide Children's Hospital, Columbus, OH, ⁸MetroHealth Medical Center, Case Western Reserve, Cleveland, OH, ⁹Seattle Children's Hospital/University of Washington School of Medicine, Seattle, WA, ¹⁰Department of Pediatrics, Joseph M. Sanzari Children's Hospital, Hackensack University Medical Center, Hackensack, NJ, ¹¹Baylor College of Medicine, Houston, TX, ¹²Baylor College of Medicine, Texas Children's Hospital, Houston, TX, ¹³CARRA, Washington, DC
Background/Purpose: Kawasaki disease (KD) is the leading cause of acquired heart disease in children in North America. Initial treatment with IVIG has significantly reduced the…
Abstract Number: 097 • 2023 Pediatric Rheumatology Symposium
Survey of Covid-19 Immunization and Infection in Patients with Systemic Juvenile Idiopathic Arthritis and Adult Onset Still’s Disease
Mariana Correia Marques¹, Paul Subrata², Carol Lake³, Ly-Lan Bergeron⁴, Rashmi Sinha⁵, Luciana Peixoto⁶, Marinka Twilt⁷ and Michael Ombrello⁸, ¹Translational Genetics and Genomics Section, National Institute of Arthritis and Musculoskeletal and Skin Diseases/Children`s National Hospital, Bethesda, MD, ²NIAID Collaborative Bioinformatics Resource (NCBR), National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, ³NIH, GAITHERSBURG, MD, ⁴NIH/NIAMS, Vienna, VA, ⁵Systemic JIA Foundation, Cincinnati, OH, ⁶Systemic JIA Foundation, Cincinnati, ⁷Alberta Children's Hospital, Calgary, AB, Canada, ⁸Translational Genetics and Genomics Section, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, North Bethesda, MD
Background/Purpose: Immunization is one of the most important tools for the control of the Covid-19 pandemic. The safety and effectiveness of the Covid-19 immunizations have…
Abstract Number: 102 • 2023 Pediatric Rheumatology Symposium
Preliminary Results from a Survey of Psychological Resilience Among JIA Patients
Daniella Schocken and Tracy Ting, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
Background/Purpose: Psychological resilience – an individuals capacity to adapt in the face of stressors and recover after adverse events – has been linked to a…
Abstract Number: 105 • 2023 Pediatric Rheumatology Symposium
Awareness of Multisystem Inflammatory Syndrome in Children Among U.S. Parents: A Cross-Sectional Survey
Lyndsey Cole¹, E. Adrianne Hammershaimb², Yuanyuan Liang², Megan Hendrich³, Dhiman Das³, Robert Petrin³, James Campbell², Sean O'Leary¹ and Jessica Cataldi¹, ¹University of Colorado School of Medicine, Denver, CO, ²University of Maryland School of Medicine, Baltimore, MD, ³Ipsos US Public Affairs, Washington, DC
Background/Purpose: Little is known about parental awareness of multisystem inflammatory syndrome in children (MIS-C), a rare but severe sequela of SARS-CoV-2 infection. We sought to…
Abstract Number: 124 • 2023 Pediatric Rheumatology Symposium
JIA-Associated TMJ Arthritis, Idiopathic Condylar Resorption or Anterior Disc Displacement – a Care Provider Survey
Daria Sosna¹, Nancy Pan², Shelly Abramowicz³, Mara Becker⁴, Melissa Lerman⁵, Cory Resnick⁶, Tova Ronis⁷, Matthew Stoll⁸, Peter Stoustrup⁹, Marinka Twilt¹⁰, CARRA Registry Investigators¹¹ and For TMJaw¹², ¹Alberta Children's Hospital/University of Calgary, Calgary, AB, Canada, ²Hospital for Special Surgery, New York, NY, ³Emory University, Atlanta, GA, ⁴Duke University Medical Center/Duke Clinical Research Institute, Durham, NC, ⁵Children's Hospital of Philadelphia, Philadelphia, PA, ⁶Harvard University, Boston, MA, ⁷Children's National Hospital, Chevy Chase, MD, ⁸University of Alabama at Birmingham, Birmingham, AL, ⁹Aarhus University, Aarhus, Denmark, ¹⁰Alberta Children's Hospital, Calgary, AB, Canada, ¹¹CARRA, Washington, DC, ¹²TMJaw, Fullerton, CA
Background/Purpose: The temporomandibular joint (TMJ) can be affected in juvenile idiopathic arthritis (JIA) patients of any age or subtype. There have been reports of isolated…
Abstract Number: 0749 • ACR Convergence 2022
Virtual Care in Rheumatology Ambulatory Clinics During the COVID-19 Pandemic: Patient/Family and Healthcare Provider Perspectives and Experiences
Whitney Hung, Carina Majaesic, Katharina Kovacs Burns, Aisha Bruce and Elaine Yacyshyn, University of Alberta, Edmonton, AB, Canada
Background/Purpose: With the expansion of virtual care during COVID-19, a cross-sectional study was designed to explore the experiences of adult patients and their families (PFs),…
Abstract Number: 2246 • ACR Convergence 2022
Rheumatoid Arthritis Patient Discordance with Provider Treatment Goals Is Associated with Poorer RA Outcomes
Kelly O'Neill¹, Pamela Sinicrope², Cynthia Crowson³, Kathryne Marks⁴, Rachel Giblon⁵, Elena Myasoedova² and John Davis², ¹Rheumatoid Patient Foundation, Winter Springs, FL, ²Mayo Clinic, Rochester, MN, ³Mayo Clinic, Eyota, MN, ⁴Brigham and Women's Hospital, Boston, MA, ⁵Mayo Clinic, Rochester, MN, Rochester, MN
Background/Purpose: We previously reported on themes in rheumatoid arthritis (RA) patients' treatment goals which associated with aspects of rheumatology care such as presence of a…
Abstract Number: 0895 • ACR Convergence 2022
COVID-19 Vaccination in Autoimmune Diseases Study: Vaccine Safety in Rheumatoid Arthritis
Naveen R¹, Ioannis Parodis², Mrudula Joshi³, Parikshit Sen⁴, Minchul Kim⁵, Vishwesh Agarwal⁶, Sinan Kardes⁷, James B. Lilleker⁸, Hector Chinoy⁹, Oliver Distler¹⁰, Ai Lyn Tan¹¹, Samuel Shinjo¹², Babur Salim¹³, Tamer A Gheita¹⁴, Nelly Ziade¹⁵, Tsvetelina Velikova¹⁶, Tulika Chatterjee⁵, Arvind Nune¹⁷, Marcin Milchert¹⁸, Abraham Edgar Gracia-Ramos¹⁹, Albert Selva O’Callaghan²⁰, Miguel Angel Saavedra Salinas²¹, Lorenzo Cavagna²², Masataka Kuwana²³, Johannes Knitza²⁴, Jessica Day²⁵, Ashima Makol²⁶, John Pauling²⁷, Chris Wincup²⁸, Erick Zamora Tehozol²⁹, Jorge Rojas Serrano³⁰, Ignacio Garcia-De La Torre³¹, Rohit Aggarwal³², Vikas Agarwal¹, Latika Gupta³³, Elena Nikiphorou³⁴ and CoVAD Study Group³⁵, ¹Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India, ²Karolinska Institutet, Stockholm, Sweden, ³Byramjee Jeejeebhoy Government Medical College and Sassoon General Hospitals, Pune, India, ⁴Maulana Azad Medical College, New Delhi, India, ⁵University of Illinois College of Medicine Peoria, Peoria, IL, ⁶Mahatma Gandhi Missions Medical College, Lucknow, India, ⁷Istanbul University, Istanbul, Turkey, ⁸The University of Manchester, Manchester, United Kingdom, ⁹The University of Manchester, Sale, United Kingdom, ¹⁰Department of Rheumatology, University Hospital Zurich, University of Zurich, Zürich, Switzerland, ¹¹University of Leeds, Leeds, United Kingdom, ¹²Faculdade de Medicina FMUSP, Universidade de São Paulo, São Paulo, Brazil, ¹³Fauji foundation hospital Rawalpindi, Rawalpindi, Pakistan, ¹⁴Rheumatology Department, Faculty of Medicine, Cairo University, Cairo, Egypt, ¹⁵Saint-Joseph University, Beirut, Lebanon, ¹⁶Sofia University St. Kliment Ohridski, Sofia, Bulgaria, ¹⁷Southport and Ormskirk Hospital NHS Trust, Southport, United Kingdom, ¹⁸Pomeranian Medical University in Szczecin, Szczecin, Poland, ¹⁹Instituto Mexicano del Seguro Social, Ciudad de México, Mexico, ²⁰Hospital Universitari Vall d'Hebron, Barcelona, Spain, ²¹IMSS, Ciudad de México, Mexico, ²²Università di Pavia, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy, Pavia, Italy, ²³Nippon Medical School Graduate School of Medicine, Tokyo, Japan, ²⁴Department of Internal Medicine 3 – Rheumatology and Immunology, Friedrich-Alexander-University Erlangen-Nürnberg and Universitätsklinikum Erlangen, 91054 Erlangen, Germany; Deutsches Zentrum Immuntherapie, Friedrich-Alexander-UniversityErlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany, ²⁵Walter and Eliza Hall Institute, Melbourne, Australia, ²⁶Mayo Clinic, Rochester, MN, Rochester, MN, ²⁷North Bristol NHS Trust, Bristol, United Kingdom, ²⁸Rayne Institute, University College London, London, United Kingdom, ²⁹Centro Medico Pensiones, Merida, Mexico, ³⁰Hospital Angeles Villahermosa, Ciudad de México, Mexico, ³¹Centro de Est. de Inv. Bas. y Clinica, S.C., Guadalajara, Mexico, ³²Division of Rheumatology and Clinical Immunology, Department of Medicine, University of Pittsburgh, Pittsburgh, PA, ³³Royal Wolverhampton Trust, Wolverhampton/University of Manchester, United Kingdom, ³⁴Leiden University Medical Center & King's College London, London, United Kingdom, ³⁵CoVAD study group, Wolwehampton, United Kingdom
Background/Purpose: COVID-19 vaccination in autoimmune diseases (COVAD) study is a large-scale real-world data on COVID-19 vaccine safety in autoimmune rheumatic diseases (AIRDs) including rheumatoid arthritis…
Abstract Number: 0948 • ACR Convergence 2022
Fertility and the Use of Assisted Reproductive Technologies: Perceptions, Thoughts and Experiences of Men and Women with Rheumatic Disease
Emily Peninger¹, Molly Leavitt¹, Cuoghi Edens¹ and Shilpa Venkatachalam², ¹University of Chicago, Chicago, IL, ²Global Healthy Living Foundation, New York, NY
Background/Purpose: Patients with rheumatic diseases have fewer biologic children than those without for a number of reasons, including infertility. Patients with rheumatic diseases may therefore…
Abstract Number: 0949 • ACR Convergence 2022
Systemic Lupus Erythematosus Women with Lupus Nephritis in Pregnancy Therapeutic CHallenge (SWITCH): The Systemic Lupus International Collaborating Clinics Experience
Joo Young (Esther) Lee¹, Arielle Mendel², Anca Askanase³, Sang-Cheol Bae⁴, Jill Buyon⁵, Ann E Clarke⁶, Nathalie Costedoat-Chalumeau⁷, Paul R Fortin⁸, Dafna Gladman⁹, John Hanly¹⁰, Murat Inanc¹¹, David Isenberg¹², Anselm Mak¹³, Marta Mosca¹⁴, Michelle Petri¹⁵, Anisur Rahman¹⁶, Rosalind Ramsey-Goldman¹⁷, Jorge Sanchez-Guerrero¹⁸, Murray Urowitz¹⁹, Daniel Wallace²⁰, Sasha Bernatsky²¹ and Evelyne Vinet², ¹McGill University, Montréal, QC, Canada, ²McGill University Health Centre, Montréal, QC, Canada, ³Columbia University Medical Center, New York, NY, ⁴Hanyang University Medical Center, Seoul, Republic of Korea, ⁵NYU Grossman School of Medicine, New York, NY, ⁶University of Calgary, Division of Rheumatology, Cumming School of Medicine, Calgary, AB, Canada, ⁷Inserm DR Paris 5, Paris, France, ⁸Centre ARThrite - CHU de Québec - Université Laval, Québec, QC, Canada, ⁹Toronto Western Hospital, Schroeder Arthritis Institute, Toronto, ON, Canada, ¹⁰Division of Rheumatology, Queen Elizabeth II Health Sciences Center (Nova Scotia Rehabilitation Site) and Dalhousie University, Halifax, NS, Canada, ¹¹Division of Rheumatology, Department of Internal Medicine, Istanbul Medical Faculty, Istanbul University, Istambul, Turkey, ¹²University College London, London, United Kingdom, ¹³Division of Rheumatology, Department of Medicine, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore, ¹⁴Rheumatology Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy, ¹⁵Johns Hopkins University School of Medicine, Division of Rheumatology, Baltimore, MD, ¹⁶Centre for Rheumatology, Department of Medicine, University College London, London, United Kingdom, ¹⁷Northwestern University Feinberg School of Medicine, Chicago, USA, Chicago, IL, ¹⁸Sinai Health System, Toronto, ON, Canada, ¹⁹University of Toronto, University Health Network, Schroeder Arthritis Institute, Toronto, ON, Canada, ²⁰Cedars-Sinai Medical Center, Los Angeles, CA, ²¹Research Institute of the McGill University Health Centre, Montréal, QC, Canada
Background/Purpose: One-third of women with SLE develop lupus nephritis (LN), and most receive mycophenolate mofetil (MMF). However, MMF is teratogenic, and needs to be switched…
Abstract Number: 0998 • ACR Convergence 2022
A Real-world Analysis Showing Significant Variance in Treatment Patterns Among over 1,000 Systemic Lupus Erythematosus (SLE) Patients in the US
Ryan Rex¹, Vibeke Strand² and Maxine Yarnall¹, ¹Spherix Global Insights, Exton, PA, ²Stanford University School of Medicine, Stanford, CA
Background/Purpose: Systemic lupus erythematosus (SLE) patients present significant challenges in management. This study was to uncover real-world treatment patterns among moderate to severely active SLE…
Abstract Number: 1194 • ACR Convergence 2022
Key Self-reported Determinants of COVID-19 Vaccine Acceptance Among Persons with and Without Autoimmune Disease
Jenny Gong¹, Emma Barnboym², megan O'Mara³, Natalie Gurevich³, Maya Mattar⁴, Donald Anthony⁵, Adam Perzynski² and Nora Singer⁶, ¹Case Western School of Medicine, Cleveland, OH, ²The MetroHealth System, Cleveland, OH, ³Cleveland Veteran Affairs Medical Center, Cleveland, OH, ⁴Louis Stokes VA Medical Center, Mayfield Heights, OH, ⁵Case, VA, Metro, Chardon, OH, ⁶The MetroHealth System at Case Western Reserve University School of Medicine, Cleveland, OH
Background/Purpose: Patients with autoimmune disease are at increased risk for complications from SARS-CoV-2 infection. We aimed to compare patient perspectives on COVID-19 vaccination among persons…

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