Department of Medicine, Division of Rheumatology, University of Wisconsin-Madison School of Medicine and Public Health, Madison, Wisconsin, USA
Department of Medicine, Division of Rheumatology, University of Wisconsin-Madison School of Medicine and Public Health, Madison, Wisconsin, USA.
Lupus Sci Med. 2023 Jul;10(2). doi: 10.1136/lupus-2023-000935.
Up to 83% of patients with SLE stop taking hydroxychloroquine (HCQ) within the first year due to knowledge gaps regarding the survival benefits of HCQ versus inflated fears of rare toxicity. Thus, there is a need for a shared decision-making tool that highlights HCQ's significant benefits versus rare harms to improve patients' understanding and align treatments with their values. The objective of this study was to describe development and piloting of a decision aid (HCQ-SAFE) to facilitate HCQ adherence, and safe, effective use by engaging patients in therapeutic decision-making.
HCQ-SAFE was developed via a collaborative process involving patients, clinicians, implementation scientists and health literacy experts. The initial prototype was informed by Agency for Healthcare Research and Quality (AHRQ) low literacy principles and key themes about HCQ use from six prior patient and clinician focus groups, with iterative expert and stakeholder feedback to deliver a final prototype. We implemented HCQ-SAFE in four clinics to examine usability and feasibility on Likert scales (0-7) and net promoter score (0%-100%).
The final HCQ-SAFE shared decision-making laminated tool organises data using pictograms showing how HCQ use reduces risk of organ damage, early death and blood clots versus low risk of eye toxicity.HCQ-SAFE was reviewed in all eligible patient visits (n=40) across four clinics on an average of ~8 min, including 25% non-English-speaking patients. All patients scored 100% on the knowledge post-test; no decisional conflicts were noted after using HCQ-SAFE. HCQ-SAFE garnered high clinician and patient satisfaction with 100% likelihood to recommend to peers.
HCQ-SAFE is a stakeholder-informed feasible shared decision-making tool that enhances communication and can potentially improve knowledge, clarify misbeliefs and engage patients in treatment decisions, including those with limited English proficiency.
由于对羟氯喹 (HCQ) 的生存获益与对罕见毒性的夸大恐惧之间的知识差距，高达 83%的 SLE 患者在第一年就停止服用 HCQ。因此，需要一种共享决策工具，突出 HCQ 的显著益处与罕见危害，以提高患者的理解，并使治疗与他们的价值观保持一致。本研究的目的是描述一种决策辅助工具 (HCQ-SAFE) 的开发和试点，通过让患者参与治疗决策，促进 HCQ 的依从性和安全、有效使用。
HCQ-SAFE 通过一个涉及患者、临床医生、实施科学家和健康素养专家的合作过程开发。初始原型是根据美国医疗保健研究与质量局 (AHRQ) 的低素养原则和来自六个先前的患者和临床医生焦点小组的关于 HCQ 使用的关键主题制定的，经过迭代的专家和利益相关者反馈，最终形成了一个原型。我们在四个诊所实施 HCQ-SAFE，使用李克特量表 (0-7) 和净推荐值 (0%-100%) 来评估其可用性和可行性。
最终的 HCQ-SAFE 共享决策分层工具使用图表组织数据，显示 HCQ 的使用如何降低器官损伤、早逝和血栓形成的风险，同时降低眼毒性的风险。在四个诊所的所有符合条件的患者就诊中，对 HCQ-SAFE 进行了回顾，平均时间约为 8 分钟，包括 25%的非英语患者。所有患者在知识后测中均得分为 100%；使用 HCQ-SAFE 后没有注意到决策冲突。HCQ-SAFE 得到了临床医生和患者的高度满意度，有 100%的可能性向同行推荐。
HCQ-SAFE 是一种由利益相关者提供信息的可行的共享决策工具，它增强了沟通，有可能提高知识，澄清误解，并使患者参与治疗决策，包括那些英语水平有限的患者。
