De Cock Diederik, Van der Elst Kristien, Stouten Veerle, Peerboom Donna, Joly Johan, Westhovens Rene, Verschueren Patrick
Department of Development and Regeneration, Skeletal Biology and Engineering Research Center, University of Leuven, Leuven, Belgium.
Rheumatol Adv Pract. 2019 Aug 30;3(2):rkz035. doi: 10.1093/rap/rkz035. eCollection 2019.
Timely treatment of patients with early RA (ERA) favours a beneficial disease outcome. However, individuals often delay their contact with a health-care professional (HCP) after ERA-related symptom onset. The aim of this study was to investigate the perspective of patients on the journey of a patient from RA symptom onset until referral to a specialist.
A subgroup of patients with ERA from the Care in ERA (CareRA) trial were interviewed retrospectively to discuss their initial ERA-related experiences preceding diagnosis, using a bespoke assessment form. The first section of the form focused on initial symptoms and help-seeking behaviour by the patients. The second part probed the actions of the HCPs consulted. Additional notes derived from the patient stories were analysed thematically.
Among 94 patients, pain (97%), swelling (73%) and stiffness (52%), typically in multiple joints, were reported as initial ERA symptoms. The general practitioner (GP) was generally the first HCP to be contacted (87%). Frequently reported reasons to visit an HCP were intense pain (90.4%) and difficulties in performing daily activities (69%). In 44.1% of patients, the HCP suspected ERA at the first visit. Approximately 25% of patients needed more than five visits before detection of ERA. GPs mainly referred patients to rheumatologists (71%). Thematic analysis uncovered that multiple HCPs were often involved in the journey to RA detection and referral.
Pain is the most commonly reported initial symptom of ERA and the main reason to visit an HCP, usually a GP. These GPs play a pivotal role in early detection and correct referral. Furthermore, the journey of a patient seems complex, often with multiple HCPs being involved.
早期类风湿关节炎（ERA）患者的及时治疗有利于获得良好的疾病转归。然而，个体在ERA相关症状出现后往往会延迟与医疗保健专业人员（HCP）的接触。本研究的目的是调查患者从RA症状出现到转诊至专科医生这一过程中的看法。
对来自ERA护理（CareRA）试验的ERA患者亚组进行回顾性访谈，使用定制的评估表讨论他们在诊断前最初的ERA相关经历。表格的第一部分聚焦于患者的初始症状和寻求帮助的行为。第二部分探究了所咨询的HCP的行为。对从患者故事中得出的其他记录进行了主题分析。
在94名患者中，疼痛（97%）、肿胀（73%）和僵硬（52%），通常累及多个关节，被报告为初始ERA症状。全科医生（GP）通常是首个被联系的HCP（87%）。就诊HCP的常见原因是剧痛（90.4%）和日常活动困难（69%）。在44.1%的患者中，HCP在首次就诊时怀疑为ERA。约25%的患者在确诊ERA之前需要就诊五次以上。GP主要将患者转诊至风湿病专科医生（71%）。主题分析发现，在RA的诊断和转诊过程中，通常涉及多个HCP。
疼痛是最常报告的ERA初始症状，也是就诊HCP（通常是GP）的主要原因。这些GP在早期诊断和正确转诊中起关键作用。此外，患者的就医过程似乎很复杂，通常涉及多个HCP。
