Hewlett Sarah, Haig-Ferguson Andrew, Rose-Parfitt Emily, Halls Serena, Freke Samuel, Creamer Paul
Department of Nursing, University of the West of England, Bristol, UK.
Rheumatology Unit, North Bristol NHS Trust, Bristol, UK.
Musculoskeletal Care. 2019 Mar;17(1):63-71. doi: 10.1002/msc.1367. Epub 2018 Nov 6.
Successful biologic disease-modifying anti-rheumatic drug (bDMARD) dose reduction appears increasingly possible from clinical trials. The present study aimed to understand the patient perspective of bDMARD dose reduction.
Patients with rheumatoid arthritis, ankylosing spondylitis or psoriatic arthritis who were self-administering subcutaneous bDMARDs therapy at two National Health Service trusts participated in semi-structured interviews. To capture multiple experiences, patients were purposefully sampled for a range of age, gender, disease duration, reducing/not reducing bDMARDs and either within 3-12 months of bDMARD initiation or ≥12 months and in remission/low disease activity. Inductive thematic analysis was utilized.
Fifteen patients were interviewed (six on dose reduction). Five overarching themes were identified. When thinking about dose reduction, patients reflected on their difficult life before bDMARDs ("Where I was then") compared with their transformative effects ("Where I am now"). All raised concerns that a dose reduction would take them back to where they used to be ("Fears for the future") and most believed it to be a cost-cutting exercise. Most had "Hopes for the future", that a reduction would lower their risk of side effects, and release funds for other patients. They wanted a clear rationale for reduction, collaborative decision making, and control over flexible dosing ("Information needs").
Patients were fearful of reducing the dose of their bDMARDs, having previously experienced uncontrollable symptoms. However, most were willing to try, provided that there was a clear rationale and that it was in their best interests, with opportunities for collaboration and dose control. These patient perspectives will inform the provision of patient information to guide clinical discussions.
从临床试验来看，成功降低生物性改善病情抗风湿药物（bDMARD）的剂量似乎越来越可行。本研究旨在了解患者对降低bDMARD剂量的看法。
在两个国民保健服务信托机构自行皮下注射bDMARD治疗的类风湿性关节炎、强直性脊柱炎或银屑病关节炎患者参与了半结构化访谈。为获取多种体验，有目的地选取了不同年龄、性别、病程、正在降低/未降低bDMARD剂量以及在开始使用bDMARD的3 - 12个月内或≥12个月且处于缓解期/低疾病活动度的患者。采用归纳主题分析法。
对15名患者进行了访谈（6名关于剂量降低）。确定了五个总体主题。在考虑剂量降低时，患者会将使用bDMARD之前艰难的生活（“我那时的状态”）与药物带来的转变效果（“我现在的状态”）进行对比。所有人都担心剂量降低会让他们回到过去的状态（“对未来的担忧”），且大多数人认为这是一种削减成本的举措。大多数人有“对未来的期望”，即降低剂量会降低副作用风险，并为其他患者腾出资金。他们希望有明确的降低剂量的理由、共同决策以及对灵活给药的控制权（“信息需求”）。
患者因之前经历过无法控制的症状而害怕降低bDMARD剂量。然而，大多数人愿意尝试，前提是有明确的理由且符合他们的最大利益，并有合作和剂量控制的机会。这些患者的看法将为提供患者信息以指导临床讨论提供参考。
