Abstracts tagged "Patient participation"

Abstract Number: PP04 • 2018 ACR/ARHP Annual Meeting
Improved Quality of Life with Patient Engagement in Research
Kelly English¹ and Graham Macdonald², ¹Arthritis Patient Advisory Board, Arthritis Research Canada, Richmond, BC, Canada, ²Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, BC, Canada
Background/Diagnosis: I am a woman, 60 years old who has lived with difficult-to-treat Rheumatoid Arthritis for 23 years. When first diagnosed with RA, there were…
Abstract Number: 1192 • 2018 ACR/ARHP Annual Meeting
The Impact of Participation in an Adalimumab (Humira) Patient Support Program on the Onset and Management of Disease Flares
Filip van Den Bosch¹, Siegfried Wassenberg², Boulos Haraoui³, Patrick Zueger⁴, Meijing Wu⁴, Ivan Lagunes Galindo⁴ and Andrew Ostor⁵, ¹Ghent University Hospital, Ghent, Belgium, ²Rheumazentrum Ratingen, Ratingen, Germany, ³Université de Montréal, Montreal, QC, Canada, ⁴AbbVie Inc., North Chicago, IL, ⁵Cabrini Medical Center, Melbourne, Australia
Background/Purpose: The AbbVie patient (pt) support program (PSP) is offered to pts prescribed adalimumab for RA and other indications. The purpose of this analysis was…
Abstract Number: 2188 • 2018 ACR/ARHP Annual Meeting
Regional Analysis of Impact of Participation in a Patient Support Program on Clinical Outcomes Among Patients with Rheumatoid Arthritis Receiving Adalimumab (Humira)
Filip van Den Bosch¹, Andrew Ostor², Patrick Zueger³, Meijing Wu³, Ivan Lagunes Galindo³ and Siegfried Wassenberg⁴, ¹Ghent University Hospital, Ghent, Belgium, ²Cabrini Medical Center, Melbourne, Australia, ³AbbVie Inc., North Chicago, IL, ⁴Rheumazentrum Ratingen, Ratingen, Germany
Background/Purpose: Patients (pts) receiving adalimumab for RA or other indications are offered participation in the AbbVie pt support program (PSP). This analysis assessed clinical outcomes…
Abstract Number: 2372 • 2018 ACR/ARHP Annual Meeting
Social Media Use for Health-Related Purposes By People with Rheumatic and Musculoskeletal Diseases – Results of a Global Survey
Paul Studenic¹, Alessia Alunno², Simon R Stones³, Valentin Ritschl⁴ and Elena Nikiphorou⁵, ¹Division of Rheumatology, Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Vienna, Austria, ²Department of Medicine, Rheumatology Unit, University of Perugia, Perugia, Italy, ³School of Healthcare, University of Leeds, Leeds, United Kingdom, ⁴Center for Medical Statistics, Informatics, and Intelligent Systems, Section for Outcomes Research, Medical University of Vienna, Vienna, Austria, Vienna, Austria, ⁵Academic Rheumatology, Department of Inflammation Biology, King's College London, London, Great Britain
Background/Purpose: Smartphone applications and social media (SM) are increasingly used, transforming the way in which people communicate. Peer interaction, remote information access and community building…
Abstract Number: 745 • 2017 ACR/ARHP Annual Meeting
An International Qualitative Research Study Exploring the Patient Experience of Raynaud’s Phenomenon in Systemic Sclerosis
John D. Pauling^1,2, Robyn T. Domsic³, Lesley Ann Saketkoo⁴, Celia Almeida⁵, Tracy M. Frech⁶, Francesca Ingegnoli⁷, Jane Withey⁸, Hilary Jay⁸, Emma Dures⁹, Joanna Robson¹⁰, Neil J. McHugh^11,12, Ariane L. Herrick^13,14, Marco Matucci-Cerinic¹⁵, Dinesh Khanna¹⁶ and Sarah Hewlett¹⁷, ¹Department of Pharmacy and Pharmacology, University of Bath, Bath, United Kingdom, ²Department of Rheumatology, Royal National Hospital for Rheumatic Diseases, Bath, United Kingdom, ³Medicine - Rheumatology, University of Pittsburgh, Pittsburgh, PA, ⁴Tulane, New Orleans, LA, ⁵HAS - Nursing and Midwifery, University of the West of England, Bristol, United Kingdom, ⁶Division of Rheumatology, University of Utah, Salt Lake City, UT, ⁷Dept. of clinical and community science, Rheumatology, Istituto G. Pini, University of Milan, Milano, Italy, ⁸Patient Research Partner, Bath, United Kingdom, ⁹Academic Rheumatology, Bristol, University of the West of England, Bristol, Bristol, United Kingdom, ¹⁰Rheumatology, University of the West of England (UWE Bristol), Bristol, United Kingdom, ¹¹Rheumatology, Royal National Hospital for Rheumatic Diseases, Bath, United Kingdom, ¹²Department of Pharmacy and Pharmacology, The University of Bath, Bath, United Kingdom, ¹³Centre for Musculoskeletal Research, University of Manchester, MAHSC, Salford Royal Hospital, Manchester, United Kingdom, ¹⁴School of Translational Medicine, University of Manchester, Manchester Academic Health Science Centre, Manchester, United Kingdom, ¹⁵Dept of Medicine/Div of Rheum, University of Florence, Florence, Italy, ¹⁶Department of Medicine, University of Michigan Scleroderma Program, Ann Arbor, MI, ¹⁷UWE Academic Rheumatology, University of West of England, Bristol, United Kingdom
Background/Purpose: Raynaud’s phenomenon (RP) is consistently ranked highest in patient surveys exploring the frequency and impact of disease related manifestations of systemic sclerosis (SSc). SSc-RP…
Abstract Number: 2725 • 2017 ACR/ARHP Annual Meeting
Understanding Vasculitis Patients’ Ability to Work with Numbers
Cole Rodman¹, Mary-Kate Tompkins¹, Holly Steigelman², Brad H. Rovin³, Stacy P. Ardoin⁴, Ellen Peters⁵ and Alexa Meara⁶, ¹The Ohio State University, Columbus, OH, ²The Ohio State University Wexner Medical Center, Columbus, OH, ³Ohio State University Medical Center, Columbus, OH, ⁴Pediatric & Adult Rheumatology, The Ohio State University Wexner Medical Center, Columbus, OH, ⁵Decision Research, Eugene, OR, ⁶Internal Medicine/Rheumatology, The Ohio State University Wexner Medical Center, Columbus, OH
Background/Purpose: In the case of a complex disease like vasculitis, the patient is often tasked with understanding complicated care plans and managing myriad medications. Without…
Abstract Number: 456 • 2016 ACR/ARHP Annual Meeting
Patient Engagement in Research: Understanding Patient Interest and Needs
Jennifer R. Horonjeff¹, Emily L. Creek² and Cindy McDaniel³, ¹Rheumatology, Columbia University Medical Center, New York, NY, ²Consumer Health, Arthritis Foundation, Atlanta, GA, ³Arthritis Foundation, Atlanta, GA
Background/Purpose: The goal of clinical and health-related research is to benefit the end-consumer—the patient. Since patients are the experts on their unique experiences living with…
Abstract Number: 1422 • 2016 ACR/ARHP Annual Meeting
Identifying Generic and Specific Patients’ Perspectives on Disease- and Treatment-Related Issues in Rheumatoid Arthritis, Psoriatic Arthritis, and Psoriasis: A Qualitative Concept Mapping Study
Tanja Schjødt Jørgensen¹, Louise Klokker¹, Henrik Gudbergsen², Simon Francis Thomsen³, Robin Christensen⁴, Henning Bliddal¹ and Lars Erik Kristensen¹, ¹The Parker Institute, Copenhagen University Hospital, Bispebjerg and Frederiksberg, Copenhagen, Denmark, ²The Parker Institute, Copenhagen University Hospital, Bispebjerg and Frederiksberg,, Copenhagen, Denmark, ³Department of Dermatology, Bispebjerg Hospital & Department of Biomedical Sciences, University of Copenhagen, Copenhagen, Denmark, ⁴Musculoskeletal Statistics Unit, The Parker Institute, Copenhagen University Hospital, Bispebjerg and Frederiksberg, Copenhagen, Denmark
Identifying generic and specific patients’ perspectives on disease- and treatment-related issues in rheumatoid arthritis, psoriatic arthritis, and psoriasis: a qualitative concept mapping studyT.S. Jørgensen1, L.…
Abstract Number: 132 • 2015 ACR/ARHP Annual Meeting
Delivering a One-Stop, Integrated, Patient-Centred Service for Patients with Rheumatic Diseases. the Finnish Approach
Elena Nikiphorou¹, Paula Väre¹, Kirsi Paalanen¹, Jelena Borodina¹, Arto Kokko², Pekka Hannonen¹ and Tuulikki Sokka-Isler³, ¹Jyvaskyla Central Hospital, Jyvaskyla, Finland, ²Jyvaskyla Central Hospital, Jyväskylä, Finland, ³Rheumatology, Jyvaskyla Central Hospital, Jyvaskyla, Finland
Background/Purpose: Rheumatology is mainly an outpatient specialty. Prompt diagnosis & treatment to prevent long-term disability in an integrated, multi-disciplinary approach to care are crucial. In reality though,…
Abstract Number: 411 • 2015 ACR/ARHP Annual Meeting
Patient Reported Outcomes in Juvenile Dermatomyositis: Assessing the Importance of Different Measures to Patients and Families
Heather Tory¹, Ruy Carrasco², Thomas Griffin³, Melissa M. Hazen⁴, Adam M. Huber⁵, Philip Kahn⁶, Angela Byun Robinson⁷, Susan Kim⁸ and The Childhood Arthritis and Rheumatology Research Alliance Juvenile Dermatomyositis Quality Measures Workgroup, ¹Rheumatology, Connecticut Children's Medical Center, Hartford, CT, ²Pediatric Rheumatology, Specially For Children, Austin, TX, ³Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ⁴Rheumatology, Children's Hospital Boston, Boston, MA, ⁵Pediatric rheumatology, IWK Health Centre, Halifax, NS, Canada, ⁶Pediatric Rheumatology, New York University, New York, NY, ⁷Pediatrics, Rainbow Babies & Children's Hospital / Case Medical Center, Cleveland, OH, ⁸Division of Immunology, Boston Children's Hospital, Boston, MA
Background/Purpose: Patient reported outcomes (PROs) are becoming increasingly important in the care of patients with chronic disease. Involving patients in their own care significantly improves…
Abstract Number: 658 • 2015 ACR/ARHP Annual Meeting
Health Related Quality of Life in Psoriatic Arthritis from the Perspective of People Living with the Condition
Ana-Maria Orbai^1,2, Suzanne Grieb³, Clifton Bingham⁴, Michelle Jones⁴, Grazyna Purwin⁵ and Katherine Clegg-Smith⁶, ¹Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, ²Rheumatology, Johns Hopkins University, Baltimore, MD, ³Johns Hopkins Bayview Medical Center, Center for Child and Community Health Research, Baltimore, MD, ⁴Johns Hopkins University, Baltimore, MD, ⁵Johns Hopkins Arthritis Center, Baltimore, MD, ⁶Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Background/Purpose: Psoriatic arthritis (PsA) is a complex inflammatory disease with variable phenotype affecting skin, joints, ligaments/tendons, nails, and the spine. Heterogeneity of clinical manifestations complicates…
Abstract Number: 2398 • 2014 ACR/ARHP Annual Meeting
Continued Participation in a 10-Year Tight Control Treat-to-Target Study in Rheumatoid Arthritis: Why Keep Patients Doing Their BeSt?
I.M. Markusse¹, L. Dirven², T.H.E. Molenaar³, N. Riyazi⁴, P.B.J. de Sonnaville⁵, P.J.S.M. Kerstens⁶, W.F. Lems⁷, T.W.J. Huizinga² and C.F. Allaart², ¹Leiden University Medical Center, Leiden, Netherlands, ²Rheumatology, Leiden University Medical Center, Leiden, Netherlands, ³Dept of Rheumatology, Groene Hart Hospital, Gouda, Netherlands, ⁴Rheumatology, Haga Hospital, The Hague, Netherlands, ⁵Rheumatology, Admiraal de Ruyter Ziekenhuis, Goes, Netherlands, ⁶Rheumatology, Jan van Breemen Research Institute | Reade, Amsterdam, Netherlands, ⁷Rheumatology, VU Medical Center, Amsterdam, Netherlands
Background/Purpose: To identify risk factors for premature study termination and patients’ motives for adherence to a long term follow-up clinical trial in rheumatoid arthritis (RA).…
Abstract Number: 715 • 2014 ACR/ARHP Annual Meeting
The REAL Life with Lupus Study: Developing a Patient Reported Outcome Measure for Use in Clinical Trials and Clinical Care
R. Paola Daly¹, Sarah Gilman², Joan T. Merrill³, Leslie M. Hanrahan⁴, Alisha Ladenburg² and Anca Askanase⁵, ¹Research & Education, Lupus Foundation of America, Washington, DC, ²Lupus Foundation of America, Washington, DC, ³Department of Clinical Pharmacology, Oklahoma Medical Research Foundation, Oklahoma City, OK, ⁴Education & Research, Lupus Foundation of America, Washington, DC, ⁵Columbia University Medical Center, New York, NY
Background/Purpose: The goal of this study is to better understand how people with systemic lupus erythematosus (SLE) in the United States experience the disease. Results…
Abstract Number: 2663 • 2013 ACR/ARHP Annual Meeting
Moving Towards Personalized Healthcare: A Patient Reported Outcome Based Algorithm Can Aid Rheumatologists and Patients In Monitoring Rheumatoid Arthritis In Daily Clinical Practice
Jos Hendrikx¹, Jaap Fransen², Alessandro Toniolo³ and Piet L.C.M. van Riel⁴, ¹Rheumatology (470), Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands, ²Department of Rheumatology, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands, ³Pfizer Pharmaceuticals, Rome, Italy, ⁴Rheumatology, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands
Background/Purpose: Several Patient Reported Outcome (PRO)-based instruments to measure disease activity in Rheumatoid Arthritis (RA) exist, though an evidence base for their use in monitoring…
Abstract Number: 2046 • 2012 ACR/ARHP Annual Meeting
Matching of Patients’ Actual and Desired Roles in Treatment Decision Making and Trust in Physicians
Akiko Aoki¹, Akiko Suda², Shouhei Nagaoka³, Mitsuhiro Takeno⁴, Yoshiaki Ishigatsubo⁴, Tatsuto Ashizawa⁵, Osamu Takahashi⁶, Sachiko Ohde⁷ and Sadayoshi Ohbu⁸, ¹General Medicien, Tokyo Medical University Hachioji Medical Center, Tokyo, Japan, ²Center for Rheumatic Diseases, Yokohama City University Medical Center, Yokohama, Japan, ³Department of Rheumatology, Yokohama Minami Kyosai Hospital, Yokohama, Japan, ⁴Department of Internal Medicine and Clinical Immunology, Yokohama City University Graduate School of Medicine, Yokohama, Japan, ⁵General Medicien, Tokyo Medical University Hachioji Medical Center, Chuo-ku,Tokyo, Japan, ⁶Center for Clinical Epidemiology, St. Luke's Life Science Instutute, Tokyo, Japan, ⁷Center of Clinical Epidemiology, St.Luke's Life of Science Institute, Tokyo, Japan, ⁸Rikkyo University, Tokyo, Japan
Background/Purpose: Shared decision-making (SDM), in which the physician and patient work together through all phases of the decision-making process, has been of increasing significance. But…

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