Department of Internal Medicine 3, Rheumatology and Immunology Friedrich Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.
Deutsches Zentrum für Immuntherapie, Friedrich-Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.
BMC Health Serv Res. 2022 Oct 28;22(1):1297. doi: 10.1186/s12913-022-08619-6.
A steadily increasing demand and decreasing number of rheumatologists push current rheumatology care to its limits. Long travel times and poor accessibility of rheumatologists present particular challenges for patients. Need-adapted, digitally supported, patient-centered and flexible models of care could contribute to maintaining high-quality patient care. This qualitative study was embedded in a randomized controlled trial (TELERA) investigating a new model of care consisting of the use of a medical app for ePRO (electronic patient-reported outcomes), a self-administered CRP (C-reactive protein) test, and joint self-examination in rheumatoid arthritis (RA) patients. The qualitative study aimed to explore experiences of RA patients and rheumatology staff regarding (1) current care and (2) the new care model.
The study included qualitative interviews with RA patients (n = 15), a focus group with patient representatives (n = 1), rheumatology nurses (n = 2), ambulatory rheumatologists (n = 2) and hospital-based rheumatologists (n = 3). Data was analyzed by qualitative content analysis.
Participants described current follow-up care as burdensome. Patients in remission have to travel long distances. Despite pre-scheduled visits physicians lack questionnaire results and laboratory results to make informed shared decisions during face-to-face visits. Patients reported that using all study components (medical app for ePRO, self-performed CRP test and joint self-examination) was easy and helped them to better assess their disease condition. Parts of the validated questionnaire used in the trial (routine assessment of patient index data 3; RAPID3) seemed outdated or not clear enough for many patients. Patients wanted to be automatically contacted in case of abnormalities or at least have an app feature to request a call-back or chat. Financial and psychological barriers were identified among rheumatologists preventing them to stop automatically scheduling new appointments for patients in remission. Rheumatology nurses pointed to the potential lack of personal contact, which may limit the holistic care of RA-patients.
The new care model enables more patient autonomy, allowing patients more control and flexibility at the same time. All components were well accepted and easy to carry out for patients. To ensure success, the model needs to be more responsive and allow seamless integration of education material.
The study was prospectively registered on 2021/04/09 at the German Registry for Clinical Trials (DRKS00024928).
不断增长的需求和不断减少的风湿病专家数量使得当前的风湿病治疗达到了极限。风湿病专家的长途旅行时间和较差的可及性给患者带来了特殊的挑战。适应需求、数字化支持、以患者为中心和灵活的护理模式有助于维持高质量的患者护理。这项定性研究嵌入在一项随机对照试验(TELERA)中,该试验调查了一种新的护理模式,包括使用医疗应用程序进行电子患者报告结果(ePRO)、自我管理 C 反应蛋白(CRP)测试以及类风湿关节炎(RA)患者的关节自我检查。这项定性研究旨在探讨 RA 患者和风湿病专家对(1)当前护理和(2)新护理模式的体验。
该研究包括对 15 名 RA 患者进行定性访谈、对 1 名患者代表进行焦点小组讨论、对 2 名风湿病护士、2 名门诊风湿病医生和 3 名医院风湿病医生进行访谈。数据通过定性内容分析进行分析。
参与者描述了当前的随访护理负担过重。缓解期的患者需要长途旅行。尽管进行了预约,但医生在面对面就诊时缺乏问卷结果和实验室结果,无法做出明智的共同决策。患者报告说,使用所有研究组件(电子患者报告结果的医疗应用程序、自我执行的 CRP 测试和关节自我检查)都很容易,并且帮助他们更好地评估他们的疾病状况。试验中使用的部分经过验证的问卷(患者指数数据 3 的常规评估;RAPID3)对许多患者来说似乎已经过时或不够清晰。患者希望在出现异常时自动收到通知,或者至少有一个应用程序功能来请求回电或聊天。风湿病专家存在经济和心理障碍,这使他们无法为缓解期患者自动预约新的就诊。风湿病护士指出可能缺乏个人联系,这可能会限制 RA 患者的整体护理。
新的护理模式使患者更加自主,同时使患者获得更多的控制和灵活性。所有组件都得到了患者的认可,并且易于实施。为了确保成功,该模型需要更具响应性,并允许无缝集成教育材料。
该研究于 2021 年 4 月 9 日在德国临床试验注册处(DRKS00024928)进行了前瞻性注册。