Patients and neurologists have different perceptions of multiple sclerosis symptoms, care and challenges.

BACKGROUND: Basic steps in the management of patients with Multiple Sclerosis (MS), such as good patient understanding of the disease and active participation in its management are extremely important, as they directly influence treatment adherence and success. Therefore, this study aimed to evaluate the perception of MS patients and neurologists pertaining to the most common disease symptoms, disabilities that impact on quality of life, and patient concerns and difficulties during medical visits, as information that can be used to improve the doctor-patient relationship. METHODS: A cross-sectional study involving two groups: the first composed of neurologists and the second of patients. Participants of the first group were selected by a Steering Committee (15 predetermined neurologists representing each region of Brazil and specialized in MS and neuroimmunological disorders, who also assumed the role of creating the survey and questionnaire). Participants of the second group were selected following dissemination of a questionnaire on the AME's social networks (Amigos Múltiplos pela Esclerose, a non-governmental organization to support patients with MS). Questions about sociodemographic data, disease impact on quality of life, symptoms perception, and concerns and issues regarding disease care were put to both groups. RESULTS: A total of 317 patients and 182 neurologists answered the questionnaires. Significant divergences were found between the perceptions of patients and neurologists in relation to orientation and information given during medical appointments, and also regarding patient participation in treatment and therapy choice. Considering the topic assessing impact on quality of life, more than 70% of neurologists perceived that autonomy to work and travel, and future planning were aspects that most affected patient lives, however, almost 50% of patients reported that disease monitoring did not affect their life in any way. Analysis of data regarding MS symptoms revealed neurologists to consider physical symptoms, such as ambulation issues, imbalance, falls and urinary incontinence, to be those most interfering with patient quality of life, whereas patients considered non-physical symptoms, such as fatigue, pain, cognitive and memory problems to be more significant. Patients with primary progressive MS complained more about ambulation issues, imbalance and falls (p<0.05), when compared to patients with other disease phenotypes. CONCLUSION: Significant differences in disease perception were found in this study. While neurologists tended to overestimate the consequences and symptoms of the disease, for most patients, the disease impact on activities did not appear to be as significant, with more complaints regarding non-physical symptoms. Although neurologists described involving patients in treatment decisions and providing them with appropriate orientation during medical appointments, the opposite was reported by patients. These results may help to improve treatment adherence and disease outcomes by redefining the doctor-patient relationship.

Fall prevention education for people with multiple sclerosis: a randomized clinical trial.

BACKGROUND: Online spaced education (OSE) is a method recognized for promoting long-term knowledge retention, changing behaviors and improving outcomes for students and healthcare professionals. However, there is little evidence about its impacts on patient education. OBJECTIVES: The aim of this research was to compare knowledge retention using educational brochure and OSE on individuals with multiple sclerosis (MS) and to verify the impact of educational methods on fall outcome. METHODS: Individuals with MS (n = 230) were randomly assigned to two types of patient education-educational brochure (control) and OSE (intervention). During 12 weeks, the intervention group received multiple-choice tests on fall prevention. Knowledge retention, behavior change and fall incidence were assessed before intervention and after 3 and 6 months. The participants' satisfaction with the education method was also evaluated. RESULTS: Knowledge retention was similar between groups, and behavior change was observed in both groups. There was a significant reduction in fall rate in the intervention group, from 0.60 to 0.27 at 6 months (P < 0.001). Participants' satisfaction achieved an average of 8.75, with no differences between groups. CONCLUSION: Individuals demonstrated significant improvement in fall rate outcome in both groups with no significant difference. In regard to test scores and satisfaction, results were similar between groups.

Detección de nudos críticos para la disminución del tiempo de espera en atención de prolapso de órganos pélvicos en hospital público chileno / Detecting critical knots to decrease the waiting time when caring the pelvic organ prolapse in a chilean public hospital

Resumen Introducción: El problema que se presenta en la atención de salud en los hospitales públicos es la alta cantidad de pacientes, generando un sostenido crecimiento en las listas de espera y provocando un aumento del tiempo de espera, generando un impacto negativo en los usuarios. Objetivo: Mejorar el proceso clínico de atención del prolapso de órganos pélvicos de un hospital público chileno. Metodología: Se identifican nudos críticos mediante diagramas de flujo, realizando un diagnóstico del proceso desde el ingreso del paciente hasta su alta del hospital. Resultados: Se identifican cada uno de los puntos críticos y se proponen soluciones para agilizar el proceso y con ello mejorar la atención a las usuarias, lo que en definitiva llevó a una disminución del tiempo de espera y, lo más relevante, a una disminución en la cantidad de personas en la lista de espera.

Abstract Introduction: The high number of patients is a common issue in public hospitals that causes a negative impact on the users due to the increment in the waiting lists and in the waiting time to be treated. Objective: To improve the clinical process for caring pelvic organ prolapse in a chilean public hospital. Methodology: The methodology was focused on identifying critical knots using flowcharts and diagnosing the patient's process from their admission until their discharge from the hospital. Results: Some solutions were proposed for each critical point identified so as to accelerate the process, thus improving users' health caring. As a result, the high number of people in the waiting lists and the waiting time decreased substantially.