Leung Jerik, Baker Elizabeth A, Kim Alfred H J
Department of Behavioral Science and Health Education, College for Public Health and Social Justice, Saint Louis University.
Division of Rheumatology, Department of Medicine, Washington University School of Medicine, Saint Louis, MO, USA.
Rheumatol Adv Pract. 2021 Jan 24;5(1):rkaa078. doi: 10.1093/rap/rkaa078. eCollection 2021.
Medication non-adherence contributes to worse health outcomes among SLE patients. The underlying mechanisms that drive medication non-adherence are poorly understood. The purpose of this study was to explore possible mechanisms of medication non-adherence by eliciting patient experiences.
Consented adult patients with ACR- or SLICC-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analysed using an iterative process. The findings were presented to an interactive public forum with SLE patients, family members and friends of patients, and health-care professionals to assess validity and for elaboration of the concepts developed.
The following three interrelated themes emerged from the interviews. First, why do rheumatologists not know more about lupus or share what they do know with their patients? Second, why do I have to take so many drugs and why do the drugs not work? Third, if my rheumatologist cannot communicate with me, why should I follow the prescribed medication regimen?
Our exploratory findings lay out a possible underlying logic by which patients might choose intentionally to engage with medication non-adherence behaviours. Patients suggested that poor communication with their rheumatologists along with a lack of validation of their symptoms contributed to them not valuing the recommendations of physicians. This also contributed to development of a cynical outlook and little belief that medication would improve their condition. Although further work is needed to validate these findings, our preliminary work suggests that interventions focusing on the development of communication skills among both patients and rheumatologists are necessary to reduce medication non-adherence.
药物治疗依从性差会导致系统性红斑狼疮（SLE）患者的健康状况更差。导致药物治疗依从性差的潜在机制尚不清楚。本研究的目的是通过了解患者的经历来探索药物治疗依从性差的可能机制。
招募了经美国风湿病学会（ACR）或系统性红斑狼疮国际协作临床联盟（SLICC）分类的成年SLE患者并获得其同意。对6名参与者进行了10次半结构化访谈。访谈进行了录音、转录，并采用迭代过程进行分析。研究结果在一个有SLE患者、患者家属和朋友以及医护人员参加的互动公共论坛上进行了展示，以评估其有效性并详细阐述所形成的概念。
访谈中出现了以下三个相互关联的主题。第一，为什么风湿病学家对狼疮了解不多，或者不与患者分享他们所知道的信息？第二，为什么我要服用这么多药物，而且这些药物为什么不起作用？第三，如果我的风湿病学家不能与我沟通，我为什么要遵循规定的药物治疗方案？
我们的探索性研究结果揭示了一种可能的潜在逻辑，患者可能据此有意选择采取不坚持药物治疗的行为。患者表示，与风湿病学家沟通不畅以及症状未得到确认导致他们不重视医生的建议。这也导致了他们产生愤世嫉俗的观点，并且几乎不相信药物会改善他们的病情。尽管需要进一步的研究来验证这些结果，但我们的初步研究表明，有必要开展旨在提高患者和风湿病学家沟通技巧的干预措施，以减少药物治疗不依从的情况。
