Outcome domains reported by patients, caregivers, healthcare professionals and stakeholders for calcium pyrophosphate deposition (CPPD): A content analysis based on semi-structured qualitative interviews from the OMERACT CPPD working group
Por:
Fuller, A, Cai, K, Diaz-Torne, C, Filippou, G, Pascart, T, Hensey, O, Grossberg, D, Christensen, R, Shea, B, Singh, JA, Tedeschi, SK, Dalbeth, N, Abhishek, A
Publicada:
1 jun 2021
Ahead of Print:
1 jun 2021
Resumen:
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. (C) 2021 Elsevier Inc. All rights reserved.
Filiaciones:
Fuller, A:
Univ Nottingham, Acad Rheumatol, Nottingham, England
NIHR Nottingham Biomed Res Ctr, Nottingham, England
Cai, K:
Univ Auckland, Bone & Joint Res Grp, Dept Med, Fac Med & Hlth Sci, Auckland, New Zealand
Diaz-Torne, C:
Univ Autonoma Barcelona, Dept Rheumatol, Hosp Santa Creu & St Pau, Barcelona, Spain
Filippou, G:
Univ Milan, Rheumatol Unit, ASST Fatebenefratelli L Sacco Univ Hosp, Milan, Italy
Pascart, T:
Lille Catholic Univ, Dept Rheumatol, Hop St Philbert, Lille, France
Hensey, O:
Cent Remedial Clin, Dublin, Ireland
Grossberg, D:
Holy Cross Hosp, Silver Spring, MD USA
Suburban Hosp, Bethesda, MD USA
Christensen, R:
Bispebjerg & Frederiksberg Hosp, Musculoskeletal Stat Unit, Parker Inst, Copenhagen, Denmark
Univ Southern Denmark, Odense Univ Hosp, Rheumatol Res Unit, Dept Clin Res, Odense, Denmark
Shea, B:
Univ Ottawa, Ottawa Hosp Res Inst, Ottawa, ON, Canada
Singh, JA:
VA Med Ctr, Med Serv, Birmingham, AL USA
Univ Alabama Birmingham UAB, Dept Med, Sch Med, Birmingham, AL USA
UAB Sch Publ Hlth, Dept Epidemiol, Birmingham, AL USA
Tedeschi, SK:
Brigham & Womens Hosp, Div Rheumatol Inflammat & Immun, 75 Francis St, Boston, MA 02115 USA
Dalbeth, N:
Univ Auckland, Bone & Joint Res Grp, Dept Med, Fac Med & Hlth Sci, Auckland, New Zealand
Abhishek, A:
Univ Nottingham, Acad Rheumatol, Nottingham, England
NIHR Nottingham Biomed Res Ctr, Nottingham, England
Green Accepted
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