Skyrme Sarah, Dixon William G, van der Veer Sabine N, Sanders Caroline, Sharp Charlotte A, Dowding Dawn
School of Health Sciences, University of Manchester, Oxford Road, Manchester, M13 9PL, UK.
Division of Health Sciences Informatics, Imaging and Data Science, University of Manchester, Oxford Road, Manchester, M13 9PL, UK.
J Eval Clin Pract. 2025 Apr;31(3):e14182. doi: 10.1111/jep.14182. Epub 2024 Oct 13.
Patients with rheumatoid arthritis (RA) experience a range of symptoms including joint pain and inflammation, stiffness, fatigue, anxiety, and low mood. Similar to patients with other long-term conditions, they may have periods of time when their disease is under control, and times when their condition is less stable, requiring treatment adjustments. The REMORA2 feasibility study explored the implementation of an integrated symptom-tracking system using a smartphone application (app), enabling patients to track day-to-day symptoms. The data was available in the electronic health record to be viewed at subsequent consultations.
This paper explores patients' comments on living with RA, and how patient-reported symptom data supports informed interactions as patients and clinicians work together to coproduce meaning from the data.
Individual semi-structured interviews were conducted with 21 patients and 7 clinicians, supplemented by nonparticipant observations of 5 clinical appointments. Thematic analysis was used to analyse data from the interviews, with an ethnographic approach used to analyse the observational data.
Both clinicians and patients reported the benefits of reviewing the data in the clinic together. This helped inform decisions about pain management and identified patients who might otherwise have dismissed symptoms such as pain, because of their natural inclination to be stoical.
Improved insights on the care of RA were generated as patients and clinicians discuss symptom tracking data. This can assist the patient-clinician dyad in the process of two-way learning and shared decision-making on the management of a long-term condition.
类风湿性关节炎（RA）患者会经历一系列症状，包括关节疼痛与炎症、僵硬、疲劳、焦虑和情绪低落。与其他患有长期疾病的患者类似，他们的病情可能有时得到控制，有时则不太稳定，需要调整治疗方案。REMORA2可行性研究探索了使用智能手机应用程序（app）实施综合症状跟踪系统，使患者能够跟踪日常症状。这些数据可在电子健康记录中获取，以便在后续会诊时查看。
本文探讨患者对患RA生活的看法，以及患者报告的症状数据如何支持患者与临床医生共同协作从数据中生成意义时进行明智的互动。
对21名患者和7名临床医生进行了个体半结构化访谈，并对5次临床预约进行了非参与观察。采用主题分析法分析访谈数据，采用人种志方法分析观察数据。
临床医生和患者都报告了在诊所共同查看数据的好处。这有助于为疼痛管理决策提供依据，并识别出那些可能因生性坚忍而忽略疼痛等症状的患者。
当患者和临床医生讨论症状跟踪数据时，对RA护理有了更好的见解。这可以帮助医患双方在长期疾病管理的双向学习和共同决策过程中发挥作用。
