Facultad de Medicina, Centro Universitario de Esclerosis Múltiple, Hospital Ramos Mejía, Universidad de Buenos Aires, Urquiza 609, Buenos Aires CP 1221, Argentina; Servicio de Neurología, Hospital Universitario Sanatorio Guemes, Argentina; Esclerosis Múltiple Argentina, Argentina.
Esclerosis Múltiple Argentina, Argentina; Hospital Británico de Buenos Aires, Argentina.
Mult Scler Relat Disord. 2022 May;61:103751. doi: 10.1016/j.msard.2022.103751. Epub 2022 Mar 23.
There is scarce information regarding the decision-making process (DMP) in people with MS (PwMS) from Latin America.
To evaluate the DMP in Argentinean PwMS and to assess its relationship with patient preferences, and clinical-demographic characteristics.
PwMS from the patient organization Esclerosis Múltiple Argentina (n = 1275) were invited to participate in a self-administered web-based survey. Participants were asked to provide clinical-demographic information and to complete a questionnaire on their perceptions about the information provided by their physician, the Control Preference Scale, and the Satisfaction with the Decisions and Care Questionnaire, and were inquired on their preferred sources of information about MS.
The survey was completed by 379 PwMS. Most were females (67%); mean age: 40.3 (SD = 11.1) years; mean disease duration: 7.9 (SD = 7.2) years. Patients' decisional control preferred role was active in 47%, shared in 27%, and passive in 26%. A moderate concordance (weighted kappa 0.55) was observed between patients' preferences and self-reported DMP. Seventy-two percent participated in the DMP according to their preferences (concordance rates: active 66%, shared 87%, passive 51%). Most (83%) declared receiving information from their neurologists, matching their preferences (94%).
Argentinian PwMS have distinctive preferences regarding information management and decision making.
有关拉丁美洲多发性硬化症患者（PwMS）决策过程（DMP）的信息很少。
评估阿根廷 PwMS 的 DMP，并评估其与患者偏好和临床人口统计学特征的关系。
多发性硬化症患者组织 Esclerosis Múltiple Argentina（n=1275）的患者被邀请参加一项基于网络的自我管理调查。参与者被要求提供临床人口统计学信息，并完成一份关于他们对医生提供的信息的看法、控制偏好量表、对决策和护理的满意度问卷，并询问他们关于多发性硬化症信息的首选来源。
共有 379 名 PwMS 完成了调查。大多数是女性（67%）；平均年龄为 40.3（SD=11.1）岁；平均病程为 7.9（SD=7.2）年。患者的决策控制偏好角色为积极的占 47%，共享的占 27%，被动的占 26%。患者的偏好和自我报告的 DMP 之间存在中度一致性（加权 kappa 0.55）。72%的患者根据自己的偏好参与了 DMP（一致率：积极 66%，共享 87%，被动 51%）。大多数（83%）人表示从他们的神经科医生那里获得信息，与他们的偏好相匹配（94%）。
阿根廷 PwMS 在信息管理和决策方面有独特的偏好。
