‘Lost time’. Patients with early inflammatory/rheumatoid arthritis and their experiences of delays in Primary Care

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.

Artrite Reumatoide E a Importância Do Diagnóstico Oportuno Em Saúde Primária: Uma Revisão De Literatura

“…Além disso, intimamente ligado ao fator anterior, o atraso e o longo intervalo entre o encaminhamento ao especialista e a consulta em atenção secundária, impedem o favorecimento "oportuno da janela terapêutica" (STACK et al, 2019). Igualmente, a trivialidade atribuída pelo médico de família à sintomatologia relatada pelo paciente durante a consulta, prejudica o benefício do diagnóstico oportuno (CHILTON et al, 2021).…”

Double positivity for rheumatoid factor and anti-CCP autoantibodies: improving referral from primary care of patients suspected of having rheumatoid arthritis

“…Various publications agree that RA treatment is delayed mainly owing to the delay in referral from PCPs to secondary care and that interventions coordinated between all the healthcare professionals involved in management of RA are needed to overcome this issue, which negatively impacts patient's quality of life (Rat et al, 2004;Barhamain et al, 2017;Chilton et al, 2021).…”

Management of Rheumatoid Arthritis in Primary Care: A Scoping Review

“…From the analysis of the interviews, the authors concluded that patients with RA and their families experience the frustration of not feeling heard, believed, or understood and have associated these feelings with their delay in being referred for second-level care by GPs. Therefore, GP awareness campaigns on the physical and psychological needs of RA patients would be useful [ 111 ].…”