Amy Fuller1, Ken Cai2, Cesar Diaz-Torne3, Georgios Filippou4, Tristan Pascart5, Owen Hensey6, David Grossberg7, Robin Christensen8, Beverley Shea9, Jasvinder A Singh10, Sara K Tedeschi11, Nicola Dalbeth2, Abhishek Abhishek12. 1. Academic Rheumatology, University of Nottingham, Nottingham, UK; NIHR Nottingham Biomedical Research Centre, Nottingham, UK. Electronic address: amy.fuller@nottingham.ac.uk. 2. Bone and Joint Research Group, Department of Medicine, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand. 3. Department of Rheumatology, Hospital de la Santa Creu i Sant Pau, Universitat Autonòma de Barcelona, Spain. 4. Rheumatology Unit, ASST-Fatebenefratelli L, Sacco University Hospital, University of Milan, Italy. 5. Department of Rheumatology, Hopital Saint-Philbert, Lille Catholic University, Lille, France. 6. The Central Remedial Clinic, Dublin, Ireland. 7. Holy Cross Hospital, Silver Spring, MD, USA; Suburban Hospital, Bethesda, MD, USA. 8. Musculoskeletal Statistics Unit, the Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen & Research Unit of Rheumatology, Department of Clinical Research, University of Southern Denmark, Odense University Hospital, Denmark. 9. Ottawa Hospital Research Institute, University of Ottawa, Ottawa, ON, Canada. 10. Medicine Service, VA Medical Center, Birmingham, AL, USA; Department of Medicine at the School of Medicine, University of Alabama at Birmingham (UAB), Birmingham, AL, USA; Department of Epidemiology at the UAB School of Public Health, Birmingham, AL, USA. 11. Division of Rheumatology, Inflammation and Immunity, Brigham and Women's Hospital, Boston, MA, USA. 12. Academic Rheumatology, University of Nottingham, Nottingham, UK; NIHR Nottingham Biomedical Research Centre, Nottingham, UK.
Abstract
INTRODUCTION: Although calcium pyrophosphate deposition (CPPD) disease is common, there are no validated outcome measures for clinical research in this condition. The aim of this study was to generate a list of outcome domains as reported by patients, their caregivers, healthcare professionals (HCPs) and stakeholders to inform the development of an Outcome Measures in Rheumatology (OMERACT) Core Domain Set for CPPD. METHODS: Patients with CPPD and their caregivers, HCPs and stakeholders took part in semi-structured qualitative interviews to explore potential outcome domains for CPPD clinical research relevant to their lived experience and knowledge of CPPD. Interviews were conducted in six countries across three continents. Data was analysed using manifest content analysis to identify outcome domains, which were tabulated and mapped to the core areas as defined by the OMERACT Filter 2.1. RESULTS: Thirty-six interviews were conducted in total. Participants comprised of 28 patients (six of which included a caregiver), seven HCPs and one stakeholder. The commonly identified (sub-) domains (d) across the 1) abnormalities/manifestations core area were joint pain (d = 35), joint swelling (d = 27), joint stiffness (d = 25), CPPD flares (d = 25); 2) life-impact core area were overall function (d=35), and specifically the ability to complete daily tasks (d = 25); and 3) societal/resource use core area were use of analgesic medicines (d = 26). Patients more commonly reported joint swelling, stiffness and range of movement, and use of analgesics while HCPs more commonly reported domains relating to presence of CPP crystals, radiologic calcification, joint damage, time to diagnosis and suitability of treatment. CONCLUSION: Among a number of potential outcome domains identified, articular manifestations, function and analgesic use were most frequently mentioned by participants. These findings will be used to develop an OMERACT Core Domain Set for CPPD.
INTRODUCTION: Although calcium pyrophosphate deposition (CPPD) disease is common, there are no validated outcome measures for clinical research in this condition. The aim of this study was to generate a list of outcome domains as reported by patients, their caregivers, healthcare professionals (HCPs) and stakeholders to inform the development of an Outcome Measures in Rheumatology (OMERACT) Core Domain Set for CPPD. METHODS: Patients with CPPD and their caregivers, HCPs and stakeholders took part in semi-structured qualitative interviews to explore potential outcome domains for CPPD clinical research relevant to their lived experience and knowledge of CPPD. Interviews were conducted in six countries across three continents. Data was analysed using manifest content analysis to identify outcome domains, which were tabulated and mapped to the core areas as defined by the OMERACT Filter 2.1. RESULTS: Thirty-six interviews were conducted in total. Participants comprised of 28 patients (six of which included a caregiver), seven HCPs and one stakeholder. The commonly identified (sub-) domains (d) across the 1) abnormalities/manifestations core area were joint pain (d = 35), joint swelling (d = 27), joint stiffness (d = 25), CPPD flares (d = 25); 2) life-impact core area were overall function (d=35), and specifically the ability to complete daily tasks (d = 25); and 3) societal/resource use core area were use of analgesic medicines (d = 26). Patients more commonly reported joint swelling, stiffness and range of movement, and use of analgesics while HCPs more commonly reported domains relating to presence of CPP crystals, radiologic calcification, joint damage, time to diagnosis and suitability of treatment. CONCLUSION: Among a number of potential outcome domains identified, articular manifestations, function and analgesic use were most frequently mentioned by participants. These findings will be used to develop an OMERACT Core Domain Set for CPPD.
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