University of Miami Miller School of Medicine, Miami, Florida.
Department of Dermatology, Brigham and Women's Hospital, Boston, Massachusetts.
JAMA Dermatol. 2022 Oct 1;158(10):1187-1191. doi: 10.1001/jamadermatol.2022.3025.
Alopecia areata (AA) is an autoimmune disorder of hair loss with a complex and evolving treatment landscape, making it an ideal setting for shared decision-making (SDM) between patients and physicians. Given the varying efficacy, experience, and risks of treatments for AA, we sought to evaluate patient preferences for SDM and the association of SDM with decisional regret.
To evaluate patient preferences for SDM and the association of SDM with decisional regret.
DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional online survey using the validated SDMQ9 scale for shared decision-making and Decisional Regret Scale (DRS) was distributed using the National Alopecia Areata Foundation (NAAF) with the aim of assessing (1) patient preferences in SDM when making treatment decisions, (2) how patients perceived the last decision to have been made, (3) which components of SDM were incorporated into the last decision, and (4) decisional regret related to their last treatment decision. The survey was distributed from July 12, 2021, to August 2, 2021, and data analysis occurred from October 2021 to March 2022.
Primary outcomes included (1) patient preferences in incorporation of SDM, (2) how patients made their most recent treatment decision, (3) which components of SDM were incorporated into their most recent treatment decision measured with the validated SDMQ9, and (4) an assessment of decisional regret in relation to SDM components and the most recent treatment modality used by the patient as measured by the validated DRS.
Of 1387 individuals who initiated the survey, 1074 completed it and were included in the analysis (77.4% completion rate). Overall, 917 respondents were women (85.4%). There were 5 American Indian or Alaska Native respondents (0.5%), 33 were Asian (3.1%), 112 Black or African American (10.4%), 836 White (77.8%), and 36 were multiracial (3.4%) or other (36 [3.4%]). The mean age (SD) was 49.3 (15.4) years. Most respondents preferred making the final treatment decision themselves after considering their physician's opinion (503 [46.8%]). Of those who preferred to make treatment decisions using SDM, most made the last AA treatment decision with their physician (596 [55%]; 95% CI, 53%-58%; P < .001). The components of SDM implemented by the patients' dermatologists most identified were the physician "explained the advantages and disadvantages of treatment options" (472 [44%]), and the physician "asked me which treatment option I prefer" (494 [45.9%]). Incorporation of SDM by physicians was generally associated with decreased decisional regret (all ORs with 95% CIs greater than 1.1; P < .01). The treatments associated with the lowest decisional regret were Janus kinase (JAK) inhibitors, followed by biologics, and deciding not to treat; whereas, the highest decisional regret was reported with anthralin and minoxidil.
The findings of this cross-sectional survey study suggest that patients with AA prefer to make treatment decisions with their dermatologist using SDM. When SDM is used, patients report less decisional regret, indicating that SDM may help improve the patient-reported quality of treatment decisions. Newer, more efficacious therapies such as JAK inhibitors may be related to lower decisional regret. Future studies should seek to devise solutions to implement SDM as the AA treatment landscape continues to evolve.
重要性：斑秃（AA）是一种具有复杂且不断演变的治疗前景的自身免疫性脱发疾病，这使其成为患者和医生之间进行共同决策（SDM）的理想环境。鉴于 AA 治疗的疗效、经验和风险各不相同，我们试图评估患者对 SDM 的偏好以及 SDM 与决策后悔之间的关联。
目的：评估患者对 SDM 的偏好以及 SDM 与决策后悔之间的关联。
设计、地点和参与者：使用经过验证的 SDMQ9 量表和决策后悔量表（DRS）进行横断面在线调查，目的是评估（1）患者在做出治疗决策时对 SDM 的偏好，（2）患者如何看待最后一次决策，（3）哪些 SDM 成分被纳入最后一次决策，以及（4）与最后一次治疗决策相关的决策后悔。调查于 2021 年 7 月 12 日至 2021 年 8 月 2 日通过国家斑秃基金会（NAAF）分发，数据分析于 2021 年 10 月至 2022 年 3 月进行。
主要结果和措施：主要结果包括（1）患者对 SDM 纳入的偏好，（2）患者最近如何做出治疗决策，（3）患者在最近的治疗决策中纳入了哪些 SDM 成分，（4）通过患者使用的经过验证的 DRS 评估与 SDM 成分和最近治疗方式相关的决策后悔。
结果：在开始调查的 1387 人中，有 1074 人完成了调查并被纳入分析（完成率为 77.4%）。总体而言，917 名受访者为女性（85.4%）。有 5 名美国印第安人或阿拉斯加原住民（0.5%），33 名亚洲人（3.1%），112 名黑人或非裔美国人（10.4%），836 名白人（77.8%），36 名多种族（3.4%）或其他（36 [3.4%]）。平均年龄（SD）为 49.3（15.4）岁。大多数受访者表示在考虑医生的意见后，他们更愿意自己做出最终的治疗决定（503 [46.8%]）。在那些希望使用 SDM 做出治疗决策的人中，大多数人最后一次与他们的皮肤科医生一起做出了 AA 治疗决策（596 [55%]；95%CI，53%-58%；P < .001）。患者的皮肤科医生实施的 SDM 成分中最常见的是医生“解释了治疗方案的优缺点”（472 [44%]），以及医生“询问我喜欢哪种治疗方案”（494 [45.9%]）。医生普遍采用 SDM 与降低决策后悔相关（所有 OR 及其 95%CI 均大于 1.1；P < .01）。与决策后悔最低相关的治疗方法是 JAK 抑制剂，其次是生物制剂，不治疗；而与决策后悔最高相关的是蒽林和米诺地尔。
结论和相关性：这项横断面调查研究的结果表明，AA 患者更愿意与皮肤科医生使用 SDM 做出治疗决策。当使用 SDM 时，患者报告的决策后悔程度较低，这表明 SDM 可能有助于提高治疗决策的患者报告质量。新的、更有效的治疗方法，如 JAK 抑制剂，可能与较低的决策后悔相关。未来的研究应寻求制定解决方案，随着 AA 治疗领域的不断发展，实施 SDM。
