Abstracts tagged "Patient reported outcomes"

Abstract Number: 2476 • ACR Convergence 2024
The Impact of Systemic Sclerosis Manifestations on Survival and Humanistic Burden: A Targeted Literature Review
vanessa smith¹, Zoe Marjenberg² and Elizabeth Volkmann³, ¹Ghent University Hospital, Gent, Belgium, ²Maverex Ltd, North Shields, United Kingdom, ³University of California, Department of Medicine, Los Angeles, CA, USA, Los Angeles
Background/Purpose: Systemic sclerosis (SSc) is a rare autoimmune disease with multiple disease manifestations, including cutaneous fibrosis, musculoskeletal inflammation, Raynaud phenomenon, calcinosis and digital ulceration. Internal…
Abstract Number: 0398 • ACR Convergence 2024
Validation of Patient-Reported Outcomes Measurement Information System® (PROMIS®) Pediatric Measures for Children with Chronic Nonbacterial Osteomyelitis Using the CHOIR Data
Mary Eckert¹, Eveline Wu², Melissa Oliver³, Joshua Scheck⁴, Sivia Lapidus⁵, Ummusen Kaya Akca⁶, Shima Yasin⁷, Aleksander Lenert⁸, Sara Stern⁹, Antonella insalaco¹⁰, Manuela Pardeo¹⁰, Gabriele Simonini¹¹, Edoardo Marrani¹², Xing Wang¹³, Bin Huang¹⁴, Leonard Kovalick¹⁵, Natalie Rosenwasser¹⁶, Erin Balay-Dustrude¹⁷, Gabriel Casselman¹⁶, Liau Adriel¹⁸, Ava Klein¹⁸, Yurong Shao⁴, Claire Yang⁴, Molly Briggs⁴, Emily Deng⁴, Iris Hamilton⁴, Ethan Mueller¹⁶, Elise Machrone⁴, Paige Trunnel⁴, Doaa Mosa¹⁹, Lori Tucker²⁰, Hermann Girschick²¹, Ronald Laxer²², Georgina Tiller²³, Jonathan Akikusa²⁴, Christian Hedrich²⁵, Karen Onel²⁶, Fatma Dedeoglu²⁷, Marinka Twilt²⁸, Seza Ozen²⁹, Polly Ferguson³⁰, Laura Schanberg³¹, Bryce Reeve³² and Yongdong (Dan) Zhao³³, ¹Seattle Children's, Mercer Island, WA, ²University of North Carolina School of Medicine, Chapel Hill, NC, ³Indiana University, Indianapolis, IN, ⁴Seattle Children's Hospital, Seattle, ⁵Hackensack University Medical Center, Montclair, NJ, ⁶Hacettepe University, Division of Pediatric Rheumatology, Department of Pediatrics, Faculty of Medicine, Ankara, Turkey, ⁷University of Iowa Carver College of Medicine, Abu Dhabi, United Arab Emirates, ⁸University of Iowa, Iowa City, IA, ⁹University of Utah, Salt Lake City, UT, ¹⁰IRCCS Ospedale Pediatrico Bambino Gesù, Rome, Italy, ¹¹Meyer Children Hospital IRCCS; NEUROFARBA Department, University of Florence, Florence, Italy, ¹²University of Florence, Firenze, Florence, Italy, ¹³Biostatistics Epidemiology and Analytics in Research, Seattle Children’s Research Institute, Seattle, WA, ¹⁴Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cinciannati, OH, ¹⁵UNC Health Care, Durham, NC, ¹⁶Seattle Children's Hospital, Seattle, WA, ¹⁷University of Washington, Seattle, WA, ¹⁸Seattle Children’s Research Institute, University of Washington, Seattle, ¹⁹Mansoura University Hospital, Mansoura City, Egypt, ²⁰BC Children's Hospital, Vancouver, BC, Canada, ²¹Vivantes Clinic Friedrichshain, Wuerzburg, Germany, ²²SickKids, Toronto, ON, Canada, ²³University of British Columbia - Vancouver, Vancouver, BC, Canada, ²⁴Royal Children's Hospital, Parkville, Victoria, Australia, ²⁵University of Liverpool, Liverpool, United Kingdom, ²⁶HSS, New York, NY, ²⁷Boston Children's Hospital, Boston, MA, ²⁸Alberta Children's Hospital, Calgary, AB, Canada, ²⁹Department of Pediatrics, Hacettepe University, Ankara, Turkey, ³⁰University of Iowa Carver College of Medicine, Iowa City, IA, ³¹Duke University Medical Center, DURHAM, NC, ³²Duke University School of Medicine, Durham, ³³University of Washington, Redmond, WA
Background/Purpose: Chronic nonbacterial osteomyelitis (CNO) is an autoinflammatory bone disease. It is critical to capture the child’s health-related quality of life impact using validated patient-reported…
Abstract Number: 0623 • ACR Convergence 2024
Select Patient Reported Outcome Measure Domains Enhance Immune Mediator Based Indexes That Inform Flare Risk and Disease Activity in Systemic Lupus Erythematosus
Melissa Munroe¹, Daniele DeFreese², Adrian Holloway², Mohan Purushothaman², Wade DeJager³, Susan Macwana³, Joel Guthridge⁴, Stan Kamp³, Nancy Redinger³, Teresa Aberle⁴, Eliza Chakravarty⁴, Cristina Arriens⁴, Yanfeng Li⁵, hu Zeng⁵, Uma Thanarajasingam⁵, Judith James⁴ and Eldon Jupe², ¹Oklahoma Medical Research Foundation; Progentec Diagnostics, Inc., Oklahoma City, OK, ²Progentec Diagnostics, Inc., Oklahoma City, ³Oklahoma Medical Research Foundation, Oklahoma City, ⁴Oklahoma Medical Research Foundation, Oklahoma City, OK, ⁵Mayo Clinic, Rochester
Background/Purpose: We have recently validated a plasma Lupus Flare Risk Index (L-FRI; Munroe et al. Ann Rheum Dis. 2024. 83 [Supp 1]: 402) and Lupus…
Abstract Number: 1062 • ACR Convergence 2024
Assessing Musculoskeletal Symptom Burden in a Cohort of Patients with Hidradenitis Suppurativa Using the IDEOM MSK-Q
Gretchen Ball¹, Hassan Hamade², Sarah Romanelli², Zachary Levy², Lourdes Perez Chada³, Joseph Merola⁴ and Alice Gottlieb⁵, ¹Albert Einstein College of Medicine, Ridgefield, CT, ²Icahn School of Medicine at Mount Sinai, New York, NY, ³Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, ⁴UT Southwestern Medical Center, Newton, MA, ⁵Icahn School of Medicine at Mount Sinai, Department of Dermatology, Seattle, WA
Background/Purpose: Hidradenitis suppurativa (HS) has been associated with inflammatory joint diseases such as psoriatic arthritis and ankylosing spondylitis. Despite this correlation, dermatologists do not routinely…
Abstract Number: 1274 • ACR Convergence 2024
Comparing Performance-Based Measures and Self-Reported Questionnaires for Assessment of Executive Function for Youth with Childhood-Onset Systemic Lupus Erythematosus
Tala El Tal¹, Jida Jaffan², Justine Ledochowski³, Louise Boulard⁴, Oscar Mwizerwa², Busisiwe Zapparoli⁵, Sarah Mossad⁶, Victoria Lishak⁷, Ibrahim Mohamed⁸, Joanna Law⁹, Lawrence Ng³, Paris Moaf⁹, Asha Jeyanathan², Adrienne Davis¹⁰, Linda Hiraki³, Deborah Levy³, Ashley Danguecan¹¹ and Andrea Knight¹², ¹The Hospital For Sick Children & Children's Hospital of Eastern Ontario (CHEO), Ottawa, ON, The Hospital for Sick Children, Division of Rheumatology, Department of Paediatrics, University of Toronto, Toronto, ON, Canada, ²The Hospital for Sick Children, Division of Rheumatology, Department of Paediatrics, University of Toronto, The Hospital for Sick Children, Neurosciences and Mental Health, Research Institute, Toronto, ON, Canada, ³The Hospital for Sick Children, Toronto, ON, Canada, ⁴Neurosciences and Mental Health Program, SickKids Research Institute; The Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ⁵The Hospital for Sick Children, Etobicoke, ON, Canada, ⁶Hospital for Sick Children, Toronto, ON, Canada, ⁷The Hospital for Sick Kids, Toronto, ON, Canada, ⁸The Hospital for Sick Children, Neurosciences and Mental Health, Research Institute, Toronto, ON, Canada, ⁹The Hospital for Sick Children, Division of Rheumatology, Department of Paediatrics, University of Toronto, Toronto, ON, Canada, ¹⁰Division of Pediatric Emergency Medicine, Department of Pediatrics, Hospital for Sick Children and University of Toronto, Toronto, ON, Canada, ¹¹The Hospital for Sick Children, Department of Psychology, University of Toronto, Toronto, ON, Canada, ¹²Division of Rheumatology, The Hospital for Sick Children; Neurosciences and Mental Health, SickKids Research Institute; Department of Paediatrics, University of Toronto, Toronto, ON, Canada
Background/Purpose: Executive dysfunction is common in childhood-onset systemic lupus erythematosus (cSLE). Comprehensive neuropsychological assessments use both performance-based measures and standardized questionnaires, capturing different cognitive constructs.…
Abstract Number: 1465 • ACR Convergence 2024
The Use of Disease Activity Thresholds for the Psoriatic Arthritis Impact of Disease Questionnaire to Assess Patient Perceptions of Disease Burden in Patients with Early Oligoarticular Psoriatic Arthritis Treated with Apremilast in a Phase 4 Trial
Laure Gossec¹, Laura Coates², Dafna Gladman³, Alexis Ogdie⁴, Peter Nash⁵, Denis Poddubnyy⁶, Arthur Kavanaugh⁷, April Armstrong⁸, Carlo Selmi⁹, Ruben Queiro Silva¹⁰, Cynthia Deignan¹¹, Rebecca Wang¹¹, Jyotsna Reddy¹¹, Michele Brunori¹¹ and Philip Mease¹², ¹Sorbonne Université, Paris, France, ²University of Oxford, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, Oxford, United Kingdom, ³University of Toronto, Toronto Western Hospital, Toronto, ON, Canada, ⁴Department of Medicine, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, ⁵School of Medicine, Griffith University, Sunshine Coast, Queensland, Australia, ⁶Charite-Universitatsmedizin Berlin, Berlin, Germany, ⁷University of California, San Diego, School of Medicine, La Jolla, CA, ⁸University of California Los Angeles, Los Angeles, CA, ⁹Department of Biomedical Sciences, Humanitas University, Rozzano, Italy, ¹⁰Rheumatology Division, Hospital Universitario Central de Asturias, Oviedo University School of Medicine, Oviedo, Spain, ¹¹Amgen Inc., Thousand Oaks, CA, ¹²Swedish Medical Center/Providence St. Joseph Health; University of Washington School of Medicine, Seattle, WA
Background/Purpose: Oligoarticular psoriatic arthritis (PsA, ≤4 joints affected) is common but understudied, as most clinical trials enroll patients (pts) with ≥3 swollen and tender joints.…
Abstract Number: 2007 • ACR Convergence 2024
Relationship Between Gout Flare Burden and Patient-Reported Outcome Following Allopurinol Initiation
Lisa Stamp¹, Chris Frampton¹, Sarah Stewart², Keith Petrie³, N Lawrence Edwards⁴, Angelo Gaffo⁵ and Nicola Dalbeth³, ¹University of Otago, Christchurch, Christchurch, New Zealand, ²Auckland University of Technology, Auckland, New Zealand, ³University of Auckland, Auckland, New Zealand, ⁴University of Florida, Florida, ⁵University of Alabama at Birmingham, Birmingham, AL
Background/Purpose: Gout flares are the most important clinical feature for people who have the disease. Given currently available treatment possibilities and limitations, low disease activity…
Abstract Number: 2188 • ACR Convergence 2024
Parent Verses Patient Perspectives of Health-Related Quality of Life Among Children with Vasculitis
Clare Peckenpaugh¹, Aimee Hersh², Sara Stern², Erin Treemarcki², Peter Merkel³ and Karen James², ¹University of Utah Department of Pediatrics, Salt Lake City, UT, ²University of Utah, Salt Lake City, UT, ³University of Pennsylvania, Philadelphia, PA
Background/Purpose: Vasculitis is a group of chronic, relapsing diseases that can lead to significant morbidity due to both disease and treatment, impacting patients’ health related…
Abstract Number: 2555 • ACR Convergence 2024
Addressing Economic Insecurities Could Improve Patient-Reported Outcomes in Lupus
Shivani Garg¹, Jay Patel¹, Meredith Ingersoll², Shelby Gomez², Amanda Weber², Sarah Panzer¹, Sancia Ferguson³, Tripti Singh¹ and Christie Bartels⁴, ¹University of Wisconsin, School of Medicine and Public Health, Madison, Madison, WI, ²UW Health, Madison, ³University of Wisconsin, Madison, Madison, WI, ⁴University of Wisconsin School of Medicine and Public Health, Madison, WI
Background/Purpose: A complex interaction between biologic factors and social determinants of health (SDoH) drives disparities in lupus (or SLE) outcomes in the US. A recent…
Abstract Number: 0405 • ACR Convergence 2024
Olokizumab, a Monoclonal Antibody Against IL-6, in Polyarticular-course Juvenile Idiopathic Arthritis (pcJIA): Results of 24 Weeks of the Phase 2 Open-label Clinical Trial
Ekaterina Alexeeva¹, Tatiana Dvoryakovskaya², Elena Zholobova³, Elizaveta Krekhova⁴, Rinat Raupov⁵, Daria Bukhanova⁶, Alina Egorova⁶, Sofia Kuzkina⁶, Mikhail Samsonov⁶, Irina Nikishina⁷ and Mikhail Kostik⁵, ¹National Medical Research Center of Children's Health, Sechenov First Moscow State Medical University of the Ministry of Health of the Russian Federation, Moscow, Russia, ²National Medical Research Center of Children's Health, Moscow, Russia, ³Sechenov First Moscow State Medical University of the Ministry of Health of the Russian Federation, Moscow, Russia, ⁴National Medical Research Centre for Children's Health, Moscow, Russia, ⁵Saint-Petersburg State Pediatric Medical University, Saint Petersburg, Russia, ⁶R-Pharm, Moscow, Russia, ⁷V. A. Nasonova Research Institute of Rheumatology, Moscow, Russia
Background/Purpose: Olokizumab (OKZ) is a direct interleukin-6 inhibitor for treatment of rheumatoid arthritis and is being investigated in the open-label Phase 2 trial in adolescents…
Abstract Number: 0635 • ACR Convergence 2024
Medical Record Natural Language Processing and Patient Biometric and Self-Reported Measures Inform an Artificial Intelligence Augmented Remote Care Management Strategy for Lupus Patients
Gerald Lushington¹, Bruce Wang², Mohan Purushothaman³, Melissa Munroe⁴, Vijay R. Nadipelli⁵, Bernard Rubin², Jessica Crawley², Beth Valashinas⁶, Reshma Khan⁷, Anil Warrier⁸, Joseph Huffstutter⁹, Jennifer Murphy¹⁰, Lizeth Santamaria², Sneha Nair², Georg Armstrong², Sandeep Nair², Daniele DeFreese³, Adrian Holloway³, Arif Sorathia², Brett Adelman², Fabricio Pautasso² and Eldon Jupe³, ¹Progentec Diagnostics, Inc, Oklahoma City, OK, ²Progentec Diagnostics, Inc., Oklahoma City, OK, ³Progentec Diagnostics, Inc., Oklahoma City, ⁴Oklahoma Medical Research Foundation; Progentec Diagnostics, Inc., Oklahoma City, OK, ⁵GSK, Medical Evidence Generation, Philadelphia, PA, ⁶Physicians Alliance of Connecticut, Milford, CT, ⁷Palm Beach Rheumatology and Wellness Center, Jupiter, FL, ⁸Millennium Rheumatology, Conroe, TX, ⁹Arthritis Associates PLLC, Signal Mountain, TN, ¹⁰Articularis Healthcare, Summerville, SC
Background/Purpose: Systemic lupus erythematosus (SLE) is one of several rheumatologic disorders that presents frequent healthcare challenges, particularly for socioeconomic and geographically disadvantaged patients. Due to…
Abstract Number: 1183 • ACR Convergence 2024
The Effectiveness of Orthosis for the Management of Hand Osteoarthritis-a Systemic Review and Meta-analysis
Nouf Alhammadi¹, Hanan Alqahtani² and Bagrat Hakobyan³, ¹HMG - Dr.Sulaiman Al Habib Medical Group, Riyadh, Saudi Arabia, ²University of toronto, Toronto, Canada, ³Independent researcher, Yerevan, Armenia
Background/Purpose: Hand osteoarthritis (OA) affects 11-33% of men and women in their 50s and 60s, significantly affecting the quality of life of those afflicted.Orthoses are…
Abstract Number: 1275 • ACR Convergence 2024
Implementing Integrated Mental Health Care in a Juvenile Myositis Clinic: A One-Year Review
Luana Flores Pereira¹, Louise Boulard², Kayla M. Baker³, Audrey Bell-Peter⁴, Vanessa Carbone³, Brian Feldman⁵, Jayne MacMahon⁶, Valerio Maniscalco⁷, Jo-Anne Marcuz⁸, Tanya Slater⁴, Kristi Whitney⁴, Y. Ingrid Goh³ and Andrea Knight⁹, ¹Neurosciences and Mental Health Program, SickKids Research Institute, Toronto, ON, Canada, ²Neurosciences and Mental Health Program, SickKids Research Institute; The Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ³Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada, ⁴Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ⁵Division of Rheumatology, The Hospital for Sick Children; Departments of Pediatrics and Medicine, Faculty of Medicine; The Institute for Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada, ⁶Division of Rheumatology, The Hospital for Sick Children; Department of Pediatrics, Temerty Faculty of Medicine, University of Toronto; Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada, ⁷Rheumatology Unit, ERN-ReCONNET Center, Meyer Children Hospital IRCCS; Department of Pediatrics, Santo Stefano Hospital, Florence, Italy, ⁸Division on Rheumatology, The Hospital for Sick Children; Department of Rehabilitation Services, The Hospital for Sick Children, Toronto, ON, Canada, ⁹Division of Rheumatology, The Hospital for Sick Children; Neurosciences and Mental Health, SickKids Research Institute; Department of Paediatrics, University of Toronto, Toronto, ON, Canada
Background/Purpose: Juvenile myositis (JM) patients experience a high burden of emotional distress, yet mental health (MH) care is not typically integrated into standard clinical practices.…
Abstract Number: 1473 • ACR Convergence 2024
Patient-Reported Symptoms Improved with Stringent Control of Swollen Joints in Patients with Psoriatic Arthritis: Results from Two Phase 3 Studies of Bimekizumab
M. Elaine Husni¹, Philip Mease², Dafna Gladman³, Barbara Ink⁴, Jérémy Lambert⁵, Patrick Healy⁶ and Laure Gossec⁷, ¹Cleveland Clinic, Cleveland, OH, ²Swedish Medical Center/Providence St. Joseph Health; University of Washington School of Medicine, Seattle, WA, ³University of Toronto, Toronto Western Hospital, Toronto, ON, Canada, ⁴UCB Pharma, Slough, United Kingdom, ⁵UCB Pharma, Colombes, France, ⁶UCB Pharma, Morrisville, NC, ⁷Sorbonne Université, Paris, France
Background/Purpose: PsA is characterized by joint and skin inflammation, and associated with debilitating symptoms of pain and fatigue.1 Previous research has shown that pain and…
Abstract Number: 2043 • ACR Convergence 2024
Evaluation of Medication Adherence of FMF Patients Transitioned from a Pediatric Clinic to an Adult Clinic: A Cross-sectional Study
Fatma Zehra Avci¹, Feyza Nur Azman², Elif Sila Unsal³ and Serdal Ugurlu⁴, ¹Department of Internal Medicine, Cerrahpasa Medical Faculty, Istanbul University-Cerrahpasa, Istanbul, Turkey, ²Cerrahpasa Medical Faculty, University of Istanbul, Istanbul, Turkey, ³Cerrahpasa Medical Faculty, Istanbul University-Cerrahpasa, Istanbul, Turkey, Istanbul, ⁴Istanbul University-Cerrahpasa, Istanbul, Turkey
Background/Purpose: Familial Mediterranean Fever (FMF) typically begins in childhood. It has been demonstrated that colchicine can reduce FMF attacks, prevent the development of amyloidosis, and…

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