Author Of 1 Presentation
P1014 - Decision Making Process in Argentinian Patients with Multiple Sclerosis (ID 1223)
Abstract
Background
Considering the complexity of the disease and its treatment, patients with multiple sclerosis (PwMS) need up-to-date evidence-based information in order to make an informed decision together with their physicians based on their preferences. There is scarce information regarding decision-making-process (DMP) in PwMS from Latin America.
Objectives
We aimed to evaluate DMP in Argentinian PwMS and to assess its relationship with patient preferences and clinical-demographic characteristics.
Methods
Twelve hundred seventy-five PwMS from the patient organization Esclerosis Múltiple Argentina (EMA) were invited to participate in a self-administered web-based survey. Participants were asked to provide clinical-demographic information and to complete a questionnaire assessing perceived information provision, the Control Preference Scale, the Satisfaction with the Decisions and Care questionnaire, and were inquired on preferred sources of information about MS. Descriptive analyses, parametric and nonparametric statistics were performed, p value <0.05 was accepted.
Results
Three hundred seventy-nine PwMS completed the survey. Most were females (67%); mean age was 40.3 (SD=11.1) years; mean disease duration was 7.9 (SD= 7.2) years. The majority of PwMS were satisfied with information provision from their neurologist on MS characteristics, prognosis, complementary studies and treatment. Patients decisional control preference role was active in 47%, shared in 27%, and passive in 26%. A moderate agreement (weighted kappa 0.55) was observed between patients’ preferences and self-reported DMP. Seventy-two percent of the PwMS participated in the DMP according to their preferences (concordance rates: active 66%, shared 87%, passive 51%). Most patients (83%) declared receiving information from their neurologists, matching their preferences (94%). Social networks were the least preferred source of information (40%).
Conclusions
Argentinian PwMS have distinctive preferences regarding information management and decision-making compared to other populations. This may be probably due to cultural, religious, or idiosyncratic issues, among others. More studies are needed to corroborate our findings in order to improve understanding of patients’ needs.