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'Lost time'. Patients with early inflammatory/rheumatoid arthritis and their experiences of delays in Primary Care
Chilton, Frances Bradley, Eleanor Mitchell, Theresa
Chilton, Frances
Bradley, Eleanor
Mitchell, Theresa
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Affiliation
South Warwickshire University NHS Foundation Trust; Worcester University
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Publication date
2021-12
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Abstract
Background: Early referral forms a crucial part in early inflammatory/rheumatoid arthritis (EI/RA) recovery. Delayed decisions to refer can lead to severe incapacity and emotional distress for individuals and family and feelings of lost time. How patients with EI/RA experience early referral decisions in Primary Care is an under explored area and warrants further investigation.
Aim: To explore how patients newly diagnosed with EI/RA experienced their early contacts with Primary Care as they negotiated their journey through the referral process into secondary care.
Design and setting: Qualitative face-to-face interviews with newly diagnosed EI/RA patients.
Methods: In-depth semi-structured interviews were conducted to explore patients' experiences of referral from first symptoms to General Practitioner referral. All participants were interviewed within 2 weeks of being diagnosed in Secondary Care. Data analysis was conducted using interpretative phenomenological analysis.
Findings: All participants in this study described having experienced struggles with their navigation through Primary Care towards diagnosis and specialist EI/RA services. This struggle comprised five key elements: 'family persuasion', 'lack of continuity in care', 'pushing for referral', 'strained relations' and 'lost time'.
Conclusion: The delays experienced by patients when attempting to reach an early referral decision in Primary Care cause frustration for those presenting with EI/RA, partly because they do not feel heard. There is a significant impact on patients and their families when referral to specialist care is delayed.
Citation
Chilton F, Bradley E, Mitchell T. 'Lost time'. Patients with early inflammatory/rheumatoid arthritis and their experiences of delays in Primary Care. Musculoskeletal Care. 2021 Dec;19(4):495-503. doi: 10.1002/msc.1546. Epub 2021 Mar 15.
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Article