Center for Health Services Research, Faculty of Health Sciences Brandenburg, Brandenburg Medical School Theodor Fontane, Rüdersdorf Bei Berlin, Germany.
Université Grenoble Alpes, AGEIS, Grenoble, France.
Rheumatol Int. 2023 Apr;43(4):695-703. doi: 10.1007/s00296-022-05224-y. Epub 2022 Oct 14.
Patient-reported outcomes (PRO) represent a cornerstone in the management of patients with rheumatoid arthritis (RA). However, PRO are currently recorded mainly on paper and only during on-site appointments. Electronic PRO (ePRO) enable continuous remote monitoring and could improve shared decision-making (SDM) and implementation of a treat-to-target (T2T) approach. This study aims to investigate patient and physician experiences, perceived drawbacks and benefits of using an ePRO web-app (ABATON RA) to digitally support SDM and T2T. A qualitative study embedded in a multicenter randomized controlled trial (RCT) consisting of interviews with RA patients and physicians that were subsequently analyzed using deductive-inductive qualitative content analysis. Between August 2021 and May 2022, interviews with ten RA patients and five physicians were completed. Three key themes emerged in the analysis: (i) App user experiences; (ii) perceived drawbacks of app-supported rheumatology care; and (iii) perceived benefits of app-supported rheumatology care. Continuous ePRO collection and a high level of standardization strained some RA patients. Certain ePRO seemed outdated and were hard to understand. Patients and physicians appreciated having an improved overview of disease activity, capturing disease flares and continuous remote monitoring. Paper- and time-saving were associated with using ePRO. Physicians feared to become too focused on ePRO data, stressed the lack of ePRO monitoring reimbursement and app interoperability. For RA patients and physicians, benefits seemed to outweigh observed drawbacks of the digitally supported SDM using ePRO. The software was easy to use and could lead to a better understanding of the individual disease course, resource allocation and treatment of rheumatoid arthritis.
患者报告结局(PRO)是类风湿关节炎(RA)患者管理的基石。然而,目前 PRO 主要记录在纸质病历上,且仅在现场就诊时记录。电子患者报告结局(ePRO)可实现连续远程监测,并有助于改善共同决策(SDM)和达标治疗(T2T)策略的实施。本研究旨在调查患者和医生使用电子患者报告结局网络应用程序(ABATON RA)数字化支持 SDM 和 T2T 的体验、感知缺陷和获益。该研究为一项嵌入多中心随机对照试验(RCT)的定性研究,包括对 RA 患者和医生的访谈,随后使用演绎-归纳定性内容分析进行分析。2021 年 8 月至 2022 年 5 月期间,完成了对 10 名 RA 患者和 5 名医生的访谈。分析中出现了三个关键主题:(i)应用程序用户体验;(ii)应用程序支持的风湿病护理的感知缺陷;和(iii)应用程序支持的风湿病护理的感知获益。连续的 ePRO 采集和高度标准化给一些 RA 患者带来了压力。某些 ePRO 似乎已经过时且难以理解。患者和医生赞赏能够更好地了解疾病活动、捕捉疾病发作和进行连续远程监测。使用 ePRO 可以节省纸张和时间。医生担心过于关注 ePRO 数据,强调缺乏 ePRO 监测报销和应用程序互操作性。对于 RA 患者和医生而言,获益似乎超过了使用 ePRO 进行数字化支持 SDM 的观察到的缺陷。该软件易于使用,可帮助更好地了解个体疾病过程、资源分配和类风湿关节炎的治疗。