Kahn Maria, Papukchieva Steffeni, Fehr Axel, Eberl Markus, Rösler Berenice, Veit Justyna, Friedrich Benjamin, Poddubnyy Denis
Temedica GmbH, Munich, Germany.
Immunology Franchise, Novartis GmbH, Nuremberg, Germany.
Ther Adv Musculoskelet Dis. 2023 Aug 8;15:1759720X231187189. doi: 10.1177/1759720X231187189. eCollection 2023.
Axial spondyloarthritis (axSpA) is a chronic inflammatory disease which primarily affects the axial skeleton resulting in chronic back pain and stiffness. According to the guideline, the first-line treatment includes non-steroidal anti-inflammatory drugs (NSAIDs), conventional synthetic disease-modifying antirheumatic drugs (csDMARDs) and non-pharmacological treatment. Second line treatment involves biological disease-modifying antirheumatic drugs (bDMARDs) such as tumour necrosis factor and interleukin-17 inhibitors.
The aim of this social media listening research project was to analyse switches of medication and the reasons thereof to gain valuable insights into real-life journeys of patients suffering from axSpA.
Publicly available posts in German-speaking disease-specific forums were scanned for disease-specific keywords and commonly used drugs by axSpA patients on the Permea platform. Posts containing at least two key words were selected and switches between medications were manually labelled. A total of 287 scraped posts between 01 July 2010 and 04 Feb 2022 were analysed.
The largest group of described medication switches was initially using bDMARDs. Switches to a different bDMARD, termination of medication and switches to glucocorticoids were most frequently named. Patients on NSAIDs switched to glucocorticoids, a different NSAID or bDMARD, whereas patients on csDMARDs most frequently changed to bDMARDs. In all medication groups the main reason for switching was insufficient efficacy and side effects. Additionally, for the medication groups bDMARDs, csDMARDs and corticosteroids, pregnancy and lactation were given as a reason for switching, whereas patients in the NSAID group never mentioned pregnancy and breastfeeding as a reason for switching treatment.
Our analysis shows medication switches based on real-life patient experiences shared with peers in a social listening setting. We also show medication switches differing from advised guidelines. Gathering real-life insights into patients' journey dealing with chronic diseases allows us to understand, and thereby improve patient care and treatment.
轴性脊柱关节炎（axSpA）是一种慢性炎症性疾病，主要影响中轴骨骼，导致慢性背痛和僵硬。根据指南，一线治疗包括非甾体抗炎药（NSAIDs）、传统合成改善病情抗风湿药（csDMARDs）和非药物治疗。二线治疗涉及生物改善病情抗风湿药（bDMARDs），如肿瘤坏死因子和白细胞介素-17抑制剂。
本社交媒体倾听研究项目的目的是分析药物转换情况及其原因，以深入了解axSpA患者的现实生活历程。
在Permea平台上，通过扫描德语特定疾病论坛上公开的帖子，查找特定疾病关键词和axSpA患者常用药物。选择包含至少两个关键词的帖子，并手动标记药物之间的转换情况。对2010年7月1日至2022年2月4日期间共287条抓取的帖子进行了分析。
所描述的药物转换中，最大的一组最初使用的是bDMARDs。转换到不同的bDMARD、停药以及转换到糖皮质激素是最常被提及的情况。使用NSAIDs的患者转换到糖皮质激素、另一种NSAID或bDMARD，而使用csDMARDs的患者最常转换为bDMARDs。在所有药物组中，转换的主要原因是疗效不佳和副作用。此外，对于bDMARDs、csDMARDs和皮质类固醇药物组，妊娠和哺乳被列为转换的原因，而NSAID组的患者从未提及妊娠和哺乳是转换治疗的原因。
我们的分析显示了基于患者在社交倾听环境中与同行分享的现实生活经历的药物转换情况。我们还展示了与建议指南不同的药物转换情况。收集患者应对慢性病历程的现实生活见解使我们能够理解并从而改善患者护理和治疗。
