Abstracts tagged "qualitative"

Abstract Number: 187 • 2020 Pediatric Rheumatology Symposium
Perspectives of Adolescents and Young Adults Around Implementing Rheumatology Healthcare Transition: Preliminary Qualitative Findings
Kristine Carandang¹, Courtney Wells ² and Peter Chiraseveenuprapund ³, ¹University of California, San Diego, San Diego, ²St Paul, ³University of California - San Diego, San Diego
Background/Purpose: Nationwide initiatives call for improved healthcare services that empower adolescents to become independent in their health management and remain engaged in healthcare through young…
Abstract Number: 1343 • 2019 ACR/ARP Annual Meeting
Pop a Pill or Give Myself a Shot? Patient Perspectives of Disease-modifying Anti-rheumatic Drug (DMARD) Choice for Rheumatoid Arthritis (RA)
Jasvinder Singh¹, Haley Tornberg ² and Susan Goodman ³, ¹University of Alabama Medical Center, Birmingham, ²Hospital for Special Surgery, New York, NY, ³Hospital For Special Surgery/Weill Cornell Medicine, New York, NY
Background/Purpose: Little is known about the patient perspective related to DMARD choice in RA. Our objective was to assess how patients decide whether to add…
Abstract Number: 2260 • 2019 ACR/ARP Annual Meeting
Patients’ Journeys Through Giant Cell Arteritis: A Qualitative Study
Jennie Best¹, Ivan Nunez ², Kristina Woodburn ², Abby Breyer ², Mike Conway ² and Margaret Michalska ¹, ¹Genentech, Inc., South San Francisco, CA, ²Azul Seven, Minneapolis, MN
Background/Purpose: Diagnosis of giant cell arteritis (GCA) is difficult due to multiple presenting symptoms, and access to care may be delayed because often multiple providers…
Abstract Number: 2277 • 2019 ACR/ARP Annual Meeting
Perspectives of Female Patients with Rheumatic Diseases Regarding Pregnancy Planning with Rheumatologists
Tierney Wolgemuth ¹, Mehret Birru Talabi ¹, Alaina Chodoff ², Sonya Borrero ³ and Mehret Talabi¹, ¹University of Pittsburgh, Pittsburgh, PA, ²UPMC, Pittsburgh, ³University of Pittsburgh, Pittsburgh
Background/Purpose: Women with rheumatic diseases may be at greater risk for adverse maternal, perinatal, and pregnancy outcomes. The American College of Rheumatology recommends that female…
Abstract Number: 147 • 2019 ACR/ARP Annual Meeting
A Qualitative Study of Factors That Influence Interest in a Career in Pediatric Rheumatology
Nishant Pandya ¹, Cyrus Sholevar ¹, Rosemary Frasso ², Dorene Balmer ³ and Jay Mehta³, ¹Sidney Kimmel Medical College at Jefferson, Philadelphia, PA, ²Jefferson College of Public Health, Philadelphia, PA, ³The Children's Hospital of Philadelphia, Philadelphia, PA
Background/Purpose: The American Academy of Pediatrics estimates that one-quarter of children with rheumatic disease live over 80 miles from the nearest pediatric rheumatologist. It has…
Abstract Number: 876 • 2019 ACR/ARP Annual Meeting
“When You Read This, You Really Feel Old!” Perspectives of Young People with Inflammatory Arthritis on Patient Reported Outcome Measures from a European Qualitative Study
Erika Mosor¹, Paul Studenic ¹, Alessia Alunno ², Ivan Padjen ³, Wendy Olsder ⁴, Sofia Ramiro ⁵, Ilaria Bini ⁶, Nele Caeyers ⁷, Laure Gossec ⁸, Marios Kouloumas ⁹, Elena Nikiphorou ¹⁰, Simon Stones ¹¹, Tanita Wilhelmer ¹² and Tanja Stamm ¹, ¹Medical University of Vienna, Vienna, Austria, ²Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy, Perugia, Italy, ³UHC Zagreb and University of Zagreb School of Medicine, Zagreb, Croatia, ⁴Patient Research Partner, Amsterdam, Netherlands, ⁵Leiden University Medical Center and Zuyderland Medical Centre, Leiden, Netherlands, ⁶ANMAR Young Patient Advocate, Avellino, Italy, ⁷Patient Research Partner, Brussels, Belgium, ⁸Sorbonne Université and Hôpital Pitié-Salpêtrière, Paris, France, ⁹Cyprus League Against Rheumatism, Nicosia, Cyprus, ¹⁰King's College London, London, United Kingdom, ¹¹University of Leeds, Leeds, United Kingdom, ¹²Österreichische Rheumaliga, Bregenz, Austria
Background/Purpose: Although patient-reported outcome measures (PROMs) are extensively used in clinical practice and research, it is unclear whether the most commonly used instruments adequately cover…
Abstract Number: 1144 • 2019 ACR/ARP Annual Meeting
Understanding Clinical Trials Participation Among Individuals of African Descent with Lupus Through the Lens of Critical Race Theory: A Qualitative Analysis
Candace Feldman¹, Jessica Williams ¹, Courtnie Phillip ¹, Corine Sinnette ¹, Karen Mancera-Cuevas ², Patricia Canessa ³, Gina Curry ⁴, Maryann Mason ² and Rosalind Ramsey-Goldman ², ¹Brigham and Women's Hospital, Boston, MA, ²Northwestern University, Chicago, IL, ³IPHA, Chicago, IL, ⁴University of Chicago, Chicago, IL
Background/Purpose: Despite a disproportionate burden of lupus and poorer outcomes among individuals of African descent (hereafter “black”) compared to white individuals, black individuals are underrepresented…
Abstract Number: 1714 • 2018 ACR/ARHP Annual Meeting
Global Consensus Building and Prioritization of Major Challenges in Lupus Diagnosis, Care, Treatment and Research
Karin Tse¹, R. Paola Daly¹, Leslie Hanrahan², Annick Anderson³, Kathleen Arntsen⁴, Sang-Cheol Bae⁵, Ian N. Bruce⁶, Karen Costenbader⁷, Thomas Dörner⁸, Amy H. Kao⁹, Susan Manzi¹⁰, Eric Morand¹¹, Sandra Raymond¹, Brad H. Rovin¹², Laura E. Schanberg¹³, Victoria P. Werth¹⁴, Joan Von Feldt¹⁵ and Kenneth Getz³, ¹Lupus Foundation of America, Washington, DC, ²Lupus Foundation of America, Washington DC, DC, ³Tufts Center for the Study of Drug Development, Boston, MA, ⁴Lupus and Allied Diseases, Inc., Verona, NY, ⁵Rheumatology, Hanyang University Hospital for Rheumatic Diseases, Seoul, Korea, Republic of (South), ⁶Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatological Sciences, The University of Manchester, Manchester, United Kingdom, ⁷Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, Boston, MA, ⁸Charité Universitätsmedizin Berlin and Deutsches Rheuma-Forschungszentrum (DRFZ), Berlin, Germany, ⁹EMD Serono Research & Development Institute, Inc. (a business of Merck KGaA, Darmstadt, Germany), Billerica, MA, ¹⁰Autoimmunity Institute and Medicine Institute, Allegheny Health Network, Pittsburgh, PA, ¹¹Medicine, School of Clinical Sciences at Monash Health, Monash University, Melbourne, Australia, ¹²Ohio State University Medical Center, Columbus, OH, ¹³Duke University Medical Center, Durham, NC, ¹⁴Department of Dermatology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, ¹⁵GlaxoSmithKline, Philadelphia, PA
Background/Purpose: The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus initiative seeking to identify and prioritize top barriers in lupus impacting…
Abstract Number: 2340 • 2018 ACR/ARHP Annual Meeting
The Impact of Chronic Glucocorticoid Use Amongst Patients with Rheumatoid Arthritis: A Qualitative Study
Jonathan Cheah^1,2, Sarah Young³, Susan M. Goodman^4,5, Catherine Hill^6,7, Susan Beard⁸, Pamela Richards⁹, Sarah Mackie¹⁰, Joanna Robson^11,12 and Iris Navarro-Millán^5,13, ¹Medicine, Hospital for Special Surgery, New York, NY, ²Medicine, Weill Cornell Medicine, New York, NY, ³Binghamton University, Binghamton, NY, ⁴Rheumatology, Weill Cornell Medicine, New York, NY, ⁵Hospital for Special Surgery, New York, NY, ⁶The Queen Elizabeth Hospital, Adelaide, Australia, ⁷Medicine, The University of Adelaide, Adelaide, Australia, ⁸Patient Research Partner, Adelaide, Australia, ⁹Patient Research Partner, Bristol, United Kingdom, ¹⁰NIHR-Leeds Musculoskeletal Biomedical Research Unit, University of Leeds, Leeds, United Kingdom, ¹¹Faculty of Health and Applied Science, University of the West of England, Bristol, United Kingdom, ¹²School of Clinical Sciences, University of Bristol, Bristol, United Kingdom, ¹³Weill Cornell Medicine, New York, NY
Background/Purpose: Glucocorticoids (GCs) have well documented adverse effects. However, the absolute risk and importance of these effects have not been well documented from the perspective…
Abstract Number: 2409 • 2018 ACR/ARHP Annual Meeting
Do Children with Juvenile Idiopathic Arthritis Play an Active Role in Their Treatment Adherence? First Results of the Rumaji Study
Guillaume Montagu¹, Ellie Mevel¹, William FAHY², Linda Rossi-Semerano³, Elisabeth Solau-Gervais⁴, Sonia Tropé⁵ and Jean-David Cohen⁶, ¹Research, Unknowns, strategy and innovation consulting, PARIS, France, ²KOURIR, Paris, France, ³Paediatric Rheumatology, Hôpital Kremlin Bicêtre, PARIS, France, ⁴Service de Rhumatologie, CHRU de Poitiers, Poitiers, France, ⁵149 avenue du Maine, ANDAR, Paris, France, ⁶IMMUNO-RHEUMATOLOGY, CHU LAPEYRONIE, MONTPELLIER, France
Background/Purpose: Adherence to DMARDs such as methotrexate and biologics is critical for patients with Juvenile Idiopathic Arthritis (JIA). Notwithstanding, few studies exists on that topic…
Abstract Number: 848 • 2017 ACR/ARHP Annual Meeting
“Suddenly You Are a Person at Risk of Developing Rheumatoid Arthritis!” Different Perspectives of Individuals on Predictive Testing – Results of an International Qualitative Interview Study
Erika Mosor¹, Michaela Stoffer², Günter Steiner³, Karim Raza⁴, Rebecca J Stack⁴, Gwenda Simons⁴, Marie Falahee⁴, Georg Schett⁵, Matthias Englbrecht⁶, Josef S. Smolen², Axel J. Hueber⁶ and Tanja Stamm⁷, ¹Section for Outcomes Research, Center for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Vienna, Austria, 1090 Vienna, Austria, ²Division of Rheumatology, Department of Internal Medicine III, Medical University of Vienna, Vienna, Austria, Vienna, Austria, ³Rheumatology, Medical University of Vienna, Vienna, Austria, ⁴Department of Rheumatology, University of Birmingham and Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK, Birmingham, United Kingdom, ⁵Rheumatology and Immunology, Department of Internal Medicine 3, Universitätsklinikum Erlangen, Erlangen, Germany, Erlangen, Germany, ⁶Department of Medicine 3, Rheumatology and Immunology, University of Erlangen-Nuremberg, Erlangen, Germany, ⁷Section for Outcomes Research, Center for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Vienna, Vienna, Austria
Background/Purpose: People at risk of developing rheumatoid arthritis (RA) may be candidates for interventions aimed at preventing RA development [1]. The identification of such at…
Abstract Number: 1243 • 2017 ACR/ARHP Annual Meeting
Clarifying Patient-Determined Barriers in Living with Systemic Lupus Erythematosus Treatment: A Qualitative Ethnographic Approach
Jerik Leung¹, Deepali Sen² and Alfred Kim³, ¹Internal Medicine/Rheumatology, Washington University School of Medicine, Saint Louis, MO, ²Division of Rheumatology, Washington University School of Medicine, St. Louis, MO, ³IM/Rheumatology, Washington University School of Medicine, St. Louis, MO
Background/Purpose: The patient-specific experience of living with SLE is underreported. While there are data addressing factors influencing the quality of life of patients with SLE,…
Abstract Number: 1263 • 2017 ACR/ARHP Annual Meeting
Relevance and Utility of Patient Reported Outcomes Measurement Information System (PROMIS®) Instruments in SLE: A Qualitative Study
Shanthini Kasturi¹, Madeline Epsten², Adena Batterman³, Roberta Horton³, Juliette Kleinman³, Jillian Rose³, Jackie Szymonifka², Laura Robbins⁴ and Lisa A. Mandl¹, ¹Rheumatology, Hospital for Special Surgery/Weill Cornell Medicine, New York, NY, ²Rheumatology, Hospital for Special Surgery, New York, NY, ³Social Work Programs, Hospital for Special Surgery, New York, NY, ⁴Education & Academic Affairs, Hospital for Special Surgery, New York, NY
Background/Purpose: The measurement of patient reported outcomes is a priority for patient-centered high value care. This is particularly true in chronic systemic diseases such as…
Abstract Number: 422 • 2016 ACR/ARHP Annual Meeting
Developing a Staff-Driven Electronic Smoking Cessation Referral Program in Rheumatology Clinics
Daniel Panyard¹, Edmond Ramly², Andrea Gilmore-Bykovskyi³, Diane Lauver³, Robert Adsit⁴, Courtney Maxcy⁵ and Christie M. Bartels⁶, ¹Population Health, University of Wisconsin School of Medicine and Public Health, Madison, WI, ²Industrial and Systems Engineering, University of Wisconsin-Madison College of Engineering, Madison, WI, ³University of Wisconsin-Madison School of Nursing, Madison, WI, ⁴University of Wisconsin Center for Tobacco Research and Intervention, Madison, WI, ⁵University of Wisconsin, Madison, WI, ⁶Rheumatology/Medicine, University of Wisconsin School of Medicine and Public Health, Madison, WI
Background/Purpose: Patients with rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) have an increased risk of premature cardiovascular disease (CVD), making comorbid risk factors like…
Abstract Number: 490 • 2016 ACR/ARHP Annual Meeting
First Report of Symptoms Using the Symptoms in Persons at Risk of Rheumatoid Arthritis (SPARRA) Questionnaire
Marian van Beers-Tas¹, Lilian van Tuyl², Karim Raza³, Rebecca J Stack⁴, Axel Finckh⁵, Delphine Courvoisier⁶, Aase Hensvold⁷, Anca I Catrina⁷, Tanja A. Stamm⁸, Erika Mosor⁹ and Dirkjan van Schaardenburg¹⁰, ¹Rheumatology, Amsterdam Rheumatology & Immunology Center, Reade, Amsterdam, Netherlands, ²Rheumatology, Amsterdam Rheumatology and immunology Center, location VU University Medical Center, Amsterdam, Netherlands, Amsterdam, Netherlands, ³University of Birmingham, Rheumatology Research Group, Institute of Inflammation and Ageing, United Kingdom, Birmingham, United Kingdom, ⁴Rheumatology, Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, United Kingdom, ⁵Rheumatology Division, University Hospital of Geneva, Geneva, Switzerland, ⁶University hospital of Geneva, Geneva, Switzerland, ⁷Rheumatology Unit, Department of Medicine, Karolinska Institute, Karolinska University Hospital, Stockholm, Sweden, ⁸Internal Medicine III, Vienna Medical University, Vienna, Austria, ⁹Section for Outcomes Research, CeMSIIS, Medical University of Vienna, Vienna, Austria, ¹⁰Rheumatology, Amsterdam Rheumatology and immunology Center, location Academic Medical Center, Amsterdam, Netherlands, Amsterdam, Netherlands
Background/Purpose: Persons at risk of rheumatoid arthritis (RA) may experience a variety of symptoms1,2. However, information on location, timing, severity and predictive value of these…

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