Patients perception about Multiple Sclerosis (MS) is a complex multifactor process, which involves physical, social and cognitive aspects. A good relationship between neurologists and patients is essential to their knowledge and interest about the disease.
The aim of this study is to promote greater awareness of the differences in perception between patients with MS and neurologists. We perform a cross-sectional study to evaluate neurologist’s and patient’s opinions about challenges, disabling symptoms and quality of life during MS diagnosis and treatment.
Participants were divided into two groups: one compound of Brazilian neurologists (selected by a Steering Committee, which was composed of MS specialists) and other compound of Brazilian MS patients (selected by a non-governmental patient support organization, called AME - Amigos Múltiplos da Esclerose). Data were collected through online questionnaires, made by the Steering Committee, in a 1-year period. The survey was composed of topics of quality of life, challenges, disabling symptoms and orientations about the disease, and was proposed for both groups.
A total of 330 patients and 182 neurologists answered the questionnaires. In the analysis of symptoms related by patients, the most voted were fatigue, ambulation issues, imbalance, falls and cognitive/memory problems, which were not related to patient’s age or disease duration. However, patients with primarily progressive MS (PPMS) complained more about ambulation issues, imbalance and falls (p < 0.001), when compared to other presentations of the disease. In analysis comparing neurologist’s and patient’s answers, divergent results were found. While almost 90% of the neurologists reported that they include the patient’s opinion in treatment choice, less than 30% of patients revealed to participate in these process (p < 0.001). More than 85% of neurologists reported guiding their patients about future plans, while less than 25% of patients described having been instructed on this (p < 0.001). While more than 90% of neurologists reported to guide their patients to smoking cessation, only almost 25% of the previously smoking patients revealed to be advised to stop the habit (p < 0.001).
This study revealed the need for neurologists to re-evaluate conduct and make them more frequent, with the intention of understanding patient’s priorities and increasing their interest in the disease.