Abstracts tagged "patient engagement"

Abstract Number: 090 • 2020 Pediatric Rheumatology Symposium
Using a Patient-Engaged Approach to Identify Cross-Cutting Disease Factors Impacting Mental Health in Youth with Rheumatologic Disease
Ashley Danguecan¹, Oluwatunmise Fawole ², Michelle Reed ³, Julia Harris ⁴, Aimee Hersh ⁵, Martha Rodriquez ⁶, Karen Onel ⁷, Erica Lawson ⁸, Tamar Rubinstein ⁹, Kaveh Ardalan ¹⁰, Esi Morgan ¹¹, Anne Paul ¹², Judy Barlin ¹³, R. Paola Daly ¹⁴, Mitali Dave ¹⁵, Shannon Malloy ¹⁶, Shari Hume ¹⁷, Suzanne Schrandt ¹⁸, Laura Marrow ¹⁹, Angela Chapson ²⁰, Donna Napoli ³, Michael Napoli ³, Miranda Moyer ³, Vincent Del Gaizo ²¹, Emily von Scheven ²² and Andrea Knight ²³, ¹Hospital for Sick Children, Toronto, Canada, ²New York University School of Medicine, New York, ³The Children's Hospital of Philadelphia, Philadelphia, ⁴Children's Mercy Kansas City, Overland Park, ⁵University of Utah Primary Children's Hospital, Salt Lake City, ⁶Riley Hospital For Children At Indiana University, Carmel, ⁷Hospital for Special Surgery, New York, ⁸UCSF, San Francisco, ⁹Albert Einstein College of Medicine, White Plains, ¹⁰Duke University Medical Center, Durham, ¹¹Cincinnati Children's Hospital, Cincinnati, ¹²Cincinnati Children's Hospital Medical Centre, Cincinnati, ¹³Lupus Foundation of America, Miami, ¹⁴Lupus Foundation of America, Washington, ¹⁵Short Hills, ¹⁶Cure JM Foundation, Leesburg, ¹⁷Encinitas, ¹⁸Arthritis Foundation, Atlanta, ¹⁹Arthritis Foundation, Saint Paul, ²⁰Children's Hospital of Philadelphia, Philadelphia, ²¹Childhood Arthritis & Rheumatology Research Alliance (CARRA), Whitehouse Station, ²²San Francisco, ²³SickKids Research Institute, Toronto, Canada
Background/Purpose: Mental health problems are common and often untreated in youth with rheumatologic disease, yet their relationship with disease features is poorly understood. We engaged…
Abstract Number: 1647 • 2019 ACR/ARP Annual Meeting
The Collaborative National Quality and Efficacy Registry for Scleroderma: Data Completion Outcomes from a Multicenter United States Cohort Using Guideline-Based Registry Practices
Victoria Shanmugam¹, Tracy Frech ², Virginia Steen ³, Laura Hummers ⁴, Ami Shah ⁵, Elana Bernstein ⁶, Dinesh Khanna ⁷, Jessica Gordon ⁸, Flavia Castelino ⁹, Lorinda Chung ¹⁰, Faye Hant ¹¹, Emily Startup ¹², John VanBuren ¹², Luke Evnin ¹³ and Shervin Assassi ¹⁴, ¹George Washington University, Georgetown, DC, ²Division of Rheumatology, University of Utah and Salt Lake VAMC, Salt Lake City, UT, ³Georgetown University, Washington, D.C., USA, Georgetown, ⁴Johns Hopkins University School of Medicine, Division of Rheumatology, Baltimore, MD, USA, Baltimore, MD, ⁵Johns Hopkins Hospital, Baltimore, MD, ⁶Division of Rheumatology, Columbia University, New York, NY, ⁷Department of Medicine, University of Michigan, Ann Arbor, Michigan, USA, Ann Arbor, ⁸Hospital for Special Surgery, New York, NY, ⁹Harvard University, Boston, MA, ¹⁰Stanford University, Palo Alto, CA, ¹¹Medical University of South Carolina, Charleston, SC, ¹²University of Utah, Salt Lake City, UT, ¹³Scleroderma Research Foundation, San Francisco, CA, ¹⁴Division of Rheumatology and Clinical Immunogenetics, University of Texas McGovern Medical School, Houston, Texas, USA, Houston, TX
Background/Purpose: The Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma is a multicenter US-based longitudinal study of patients with systemic sclerosis (SSc) within 5…
Abstract Number: 2765 • 2019 ACR/ARP Annual Meeting
Assessing the Impact of Digital Health Coaching on Quality Adjusted Life Years, Symptom Severity and Disease Activity in Patients with Rheumatoid Arthritis
Matt Allsion¹, Michael McMorris ², Dhiren Patel ² and B Stephen Burton ³, ¹Pack Health, Birmigham, AL, ²Pack Health, Birmingham, ³Pack Health, Birmingham, AL
Background/Purpose: Rheumatoid arthritis (RA) is the most common autoimmune inflammatory arthritis in adults. RA has a significant negative impact on the ability to perform daily…
Abstract Number: 2347 • 2018 ACR/ARHP Annual Meeting
Effectiveness of Shared Decision Making in Systemic Lupus Erythematosus Patients at OSU
Juliette Yedimenko¹, Paige Hackenberger², Emily Sullivan³, Kelly Morris⁴ and Alexa Meara⁵, ¹The Ohio State University Wexner Medical Center, Columbus, OH, ²The Ohio State University School of Medicine, Columbus, OH, ³The Ohio State Univeristy Wexner Medical Center, Columbus, OH, ⁴Rheumatology and Immunology, The Ohio State University, Columbus, OH, ⁵Internal Medicine/Rheumatology, The Ohio State University Wexner Medical Center, Columbus, OH
Background/Purpose: Patient autonomy is an integral part of the treatment process. For effective shared decision making (SDM) patients must fully understand their disease process, prognosis…
Abstract Number: 2360 • 2018 ACR/ARHP Annual Meeting
Perceptions of Patients with Rheumatoid Arthritis about Self-Assessment of Disease Activity after Watching an Educational Video: Qualitative Pilot Results from the Auto-DAS in Middle Eastern Arab Countries Study
Nelly Ziade¹, Sahar Saad², Manal al Mashaleh³, Lina el Kibbi⁴, Bassel el Zorkany⁵, Humeira Badsha⁶, Ghita Harifi⁶, Amani Daher⁷, Nelly Salloum⁸, Basel Masri⁹ and Thurayya Arayssi¹⁰, ¹Rheumatology, Saint-Joseph University, Beirut, Lebanon, ²Rheumatology, King Hamad University Hospital, Bahrain, Bahrain, ³Rheumatology, King Hussein Medical Center, Royal Medical Services, Amman, Jordan, ⁴Rheumatology, Specialized Medical Center, Riyadh, Saudi Arabia, ⁵Rheumatology, Cairo University, Cairo, Egypt, ⁶Dr. Humeira Badsha Medical Center, Dubai, United Arab Emirates, ⁷Medicine, Saint-Joseph University, Beirut, Lebanon, ⁸Registered Nurse, Beirut, Lebanon, ⁹Rheumatology, Jordan Hospital, Amman, Jordan, ¹⁰Medicine, Weill Cornell Medicine-Qatar, Doha, Qatar
Background/Purpose: Empowering RA patients through education is linked to improved adherence, treatment decisions and speeding up the assessment process during consultation. The purpose of the…
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: PP07 • 2018 ACR/ARHP Annual Meeting
Strengthening My Resiliency: How My Interprofessional Healthcare Team and I Improved My Management of Lupus
Cecilia Amoakohene¹, Jorge Sanchez-Guerrero², Murray Urowitz², Dafna D Gladman², Zahi Touma² and Laura Wakani², ¹Unaffiliated, Toronto, ON, Canada, ²University of Toronto Lupus Research Program, Toronto Western Hospital, Toronto, ON, Canada
Background/Diagnosis: I was diagnosed with systemic lupus erythematosus (SLE) at the age of eleven and have experienced multiple SLE flares, hospitalizations, invasive procedures and complex…
Abstract Number: PP11 • 2018 ACR/ARHP Annual Meeting
The Road Less Traveled– Nontraditional Approaches to Increased Patient Adherence and Positive Outcomes
Carlene Harrison, AstraZeneca, Gaithersburg, MD
Background/Diagnosis: African-American female diagnosed with SLE, Lupus Nephritis, Discoid Lupus, and Raynaud’s Phenomenon in 2011. Symptoms included joint pain, edema in the ankles, malar rash,…
Abstract Number: 2186 • 2018 ACR/ARHP Annual Meeting
Process Evaluation of a Culturally-Sensitive, Community Based Self-Management Program for First Nations People with Arthritis and Their Families
Diane Lacaille¹, June Kaminski², Jade Collison³, Linda Lavender⁴, Monica Brown⁵, Kim Roberts⁶, Deborah Da Costa⁷, Paul Adam⁸, Linda Li² and Allen Lehman⁹, ¹Arthritis Research Canada/University of British Columbia, Medicine/Rheumatology, Richmond, BC, Canada, ²Arthritis Research Canada, Richmond, BC, Canada, ³Haida Health Centre, Old Massett, BC, Canada, ⁴Kwakiutl District Council Health Services, Campbell River, BC, Canada, ⁵Director, Haida Health Centre, Old Massett, BC, Canada, ⁶Director, Kwakiutl District Council Health Services, Campbell River, BC, Canada, ⁷Medicine, McGill University, Montreal, QC, Canada, ⁸Mary Pack Arthritis Program, Vancouver, BC, Canada, ⁹Senior Medical Scientific Liaison-Rheumatology, Janssen, Pharmaceutical Companies of Johnson and Johnson, Vancouver, BC, Canada
Background/Purpose: First Nation community consultations identified arthritis as a priority health concern and the need for culturally sensitive health services adapted to community needs. In…
Abstract Number: 2343 • 2018 ACR/ARHP Annual Meeting
Exploring Decision Making Needs about Pain Management Among Adolescents with Juvenile Idiopathic Arthritis and Their Families: Preliminary Results from Interviews
Karine Toupin-April¹, Jennifer N. Stinson², Adam Huber^3,4, Ciarán M. Duffy⁵, Isabelle Gaboury⁶, Esi Morgan^7,8, Lucie Brosseau⁹, William Brinkman^7,8, Linda Li¹⁰, Tania El Hindi¹¹, Aditi Sivakumar¹¹, Marg Bisch¹², Janice Cohen¹³, Elizabeth Stringer¹⁴, France Légaré¹⁵, Laurie Proulx¹⁶, Paul R. Fortin¹⁷ and Peter Tugwell¹⁸, ¹Children’s Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada, ²Anesthesia and Pain Medicine, The Hospital for Sick Children, Toronto, ON, Canada, ³IWK Health Centre, Halifax, NS, Canada, ⁴Dalhousie University, Halifax, NS, Canada, ⁵Children's Hospital of Eastern Ontario and University of Ottawa, Ottawa, ON, Canada, ⁶Universite de Sherbrooke, Sherbrooke, ON, Canada, ⁷Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ⁸University of Cincinnati, Cincinnati, OH, ⁹University of Ottawa, Ottawa, ON, Canada, ¹⁰Arthritis Research Canada, Richmond, BC, Canada, ¹¹Children's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada, ¹²Children's Hospital of Eastern Ontario, Ottawa, ON, Canada, ¹³Children's Hospital of Eastern Ontario Research Institute, ottawa, ON, Canada, ¹⁴Department of Rheumatology, IWK Health Centre, Halifax, NS, Canada, ¹⁵Laval University, Montreal, QC, Canada, ¹⁶Canadian Arthritis Patient Alliance, Ottawa, ON, Canada, ¹⁷Medicine, CHU de Québec - University of Laval, Quebec, QC, Canada, ¹⁸Center For Global Health, Institute of Population Hlth, Ottawa, ON, Canada
Background/Purpose: Adolescents with juvenile idiopathic arthritis (JIA), one of the most common causes of chronic musculoskeletal pain among youth, face many difficult decisions. However, we…
Abstract Number: 2030 • 2017 ACR/ARHP Annual Meeting
Patient Motivation in Inflammatory Arthritis: The Use of Ultrasound-Guided Patient Education to Endorse Medication Adherence and Facilitate Cost-Effective Targeted Management
Yasser M. El Miedany^1,2, Maha El Gaafary³, Nadia El Aroussy¹, Sally Youssef⁴ and Deborah Palmer⁵, ¹Rheumatology and Rehabilitation, Ain Shams University, Cairo, Egypt, ²Rheumatology, Darent Valley Hospital, Dartford, United Kingdom, ³Community, Environmental and Occupational Medicine, Ain Shams University, Abbassia, Egypt, ⁴Rheumatology & Rehabilitation, Ain Shams University, Cairo, Egypt, ⁵Rheumatology, North Middlesex University Hospital, London, United Kingdom
Background/Purpose: To assess the value of sharing the real-time ultrasound (US) images of the inflamed joints/ tendons with inflammatory arthritis patients and its impact on:…
Abstract Number: 2251 • 2017 ACR/ARHP Annual Meeting
Preferences for Physical Activity: A Discrete Choice Experiment in People with Chronic Knee Pain
Daniel Pinto¹, Ulf Bockenholt², Rowland W. Chang^3,4, Julia (Jungwha) Lee⁵, Jane Holl⁶, Daniel Finn⁶, Leena Sharma⁷, Allen Heinemann⁸ and Paul Hansen⁹, ¹Department of Physical Therapy & Human Movement Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, ²Department of Marketing, Kellogg School of Management, Northwestern University, Evanston, IL, ³Rheumatology, Northwestern University Feinberg School of Medicine, Chicago, IL, ⁴Preventive Medicine, Medicine, and Physical Medicine & Rehabilitation, Northwestern University Feinberg School of Medicine, Chicago, IL, ⁵Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, ⁶Center for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, IL, ⁷Division of Rheumatology, Northwestern University Feinberg School of Medicine, Chicago, IL, ⁸Center for Rehabilitation Outcomes Research, Shirley Ryan Ability Lab, Chicago, IL, ⁹Economics, University of Otago, Dundin, New Zealand
Preferences For Physical Activity: A Discrete Choice Experiment In People With Chronic Knee Pain Background/Purpose: Understanding preferences for physical activity (PA) can help guide patient…
Abstract Number: 2257 • 2017 ACR/ARHP Annual Meeting
Assessing the Impact of a Digital Health Coaching Program for Patients with Rheumatoid Arthritis
Imon Ghosh¹, Uma Srivastava¹, B Stephen Burton², Maria Antonia Garcia-Espinosa¹, Dhiren Patel³ and Mazi Rasulnia⁴, ¹Strategic Partnerships, Pack Health, Birmingham, AL, ²Outcomes, Pack Health, Birmingham, AL, ³Pack Health, Cambridge, MA, ⁴Co-Founder / Strategic Partnerships, Pack Health, Birmingham, AL
Background/Purpose: Despite considerable advancements in pharmacotherapy treatments, millions of people still suffer with Rheumatoid Arthritis (RA). This puts management in the hands of the patients,…
Abstract Number: 2269 • 2017 ACR/ARHP Annual Meeting
The Meaningful Patient Engagement in Research Framework – an Empirically Based Conceptual Framework
Clayon Hamilton^1,2, Alison Hoens^1,2,3, Catherine L. Backman^4,5, Annette McKinnon⁶, Shanon McQuitty⁶, Kelly English⁶ and Linda Li⁴, ¹Physical Therapy, University of British Columbia, Vancouver, BC, Canada, ²Arthritis Research Canada, Richmond, BC, Canada, ³BC SUPPORT Unit, Vancouver, BC, Canada, ⁴Rheumatology, Arthritis Research Canada, Richmond, BC, Canada, ⁵Occupational Science & Occupational Therapy, The University of British Columbia, Vancouver, BC, Canada, ⁶Arthritis Patient Advisory Board, Arthritis Research Canada, Richmond, BC, Canada
Background/Purpose: Patient engagement in research is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. To…
Abstract Number: 2696 • 2017 ACR/ARHP Annual Meeting
Things Left Unsaid: Important Topics That Are Not Discussed between Patients with Systemic Sclerosis, Their Carers and Their Healthcare Professionals
Christopher Denton¹, Bee Laird², Lizette Moros³ and José Luis Luna Flores⁴, ¹Department of Rheumatology, University College London, Royal Free Hospital, London, United Kingdom, ²Reframe Research, East Sussex, United Kingdom, ³Boehringer-Ingelheim, Ingelheim, Germany, ⁴Boehringer Ingelheim, Ingelheim, Germany
Background/Purpose: Systemic sclerosis (SSc) is a serious rare condition that can be complicated by internal organ damage including interstitial lung fibrosis (SSc-ILD), which is a…

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