Experience and impact of crystal pyrophosphate deposition (CPPD) from a patient and caregiver perspective: A qualitative exploration from the OMERACT CPPD working group
Por:
Fuller, A, Cai, K, Filippou, G, Pascart, T, Diaz-Torne, C, 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:
Objective: To explore the lived experience of people with calcium pyrophosphate deposition (CPPD) disease and the impact of this condition on their daily lives.
Methods: Patients with CPPD and their caregivers were invited to take part in a one-to-one (patient only) or paired (patient and caregiver) semi-structured interview. Interviews covered patients' diagnosis and treat-ment experiences, and the impact of CPPD on their daily lives. Transcribed interviews were analysed using inductive thematic analysis.
Results: 28 patient interviews, six of which included a caregiver, were conducted across five countries. Acute CPP crystal arthritis flares resulted in temporary but profound disability for most patients, disrupting their ability to go about day-to-day activities, and they sought immediate medical attention. CPPD+OA and chronic CPP crystal inflammatory arthritis presented patients with longer term limitations in daily lives. Patients and their caregivers described these disruptions and limitations, which included a reduced ability or inability to complete household and self-care tasks, exercise, socialise, work and drive. They also described how arthritis pain and resulting limitations adversely impacted upon patients' psychological wellbeing. Delays in referral to specialists and diagnostic uncertainty were described by many. Lack of appropriate treatment or access to treatments only upon worsening of symptoms impacted upon the length of time some patients spent in pain and with functional limitations.
Conclusion: This study is the first to demonstrate the wide-ranging impact of CPPD, and highlights the need for improved diagnosis, physician training, as well as greater emphasis upon finding targeted therapies to specifically treat 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, Dept Med, Bone & Joint Res Grp, Fac Med & Hlth Sci, Auckland, New Zealand
Filippou, G:
Univ Milan, Rheumatol Unit, ASST Fatebenefratelli L Sacco Univ Hosp, Milan, Italy
Pascart, T:
Lille Catholic Univ, Dept Rheumatol, Hop St Philibert, Lille, France
Diaz-Torne, C:
Univ Autonoma Barcelona, Hosp Santa Creu & St Pau, Dept Rheumatol, Barcelona, Spain
Hensey, O:
Cent Remedial Clin, Dublin, Ireland
Grossberg, D:
Holy Cross Hosp, Silver Spring, MD USA
Suburban Hosp, Bethesda, MD USA
Christensen, R:
Dept Clin Res, Copenhagen, Denmark
Univ Southern Denmark, Odense Univ Hosp, Rheumatol Res Unit, Sect Biostat & Evidence Based Res,Parker Inst,Bis, 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, Sch Med, Dept 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, Dept Med, Bone & Joint Res Grp, Fac Med & Hlth Sci, Auckland, New Zealand
Abhishek, A:
Univ Nottingham, Acad Rheumatol, Nottingham, England
NIHR Nottingham Biomed Res Ctr, Nottingham, England
Open Access
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