The Communication of Multiple Sclerosis Diagnosis: The Patients’ Perspective

Abstract

Background. Multiple sclerosis (MS) is the leading cause of nontraumatic neurological disability in young adults in Europe and in the United States. The uncertainty regarding its evolution makes the diagnosis disclosure a difficult process. Objective. The aim of the study was to provide patients’ global perspective towards MS diagnosis communication. Methods. 150 consecutive patients, recently diagnosed with CIS or MS, were asked to complete a 17-item questionnaire assessing factors influencing their satisfaction with the information provided. Results. Eighty-six patients fulfilled diagnostic criteria for MS and 64 for CIS. Diagnosis disclosure took place in a private setting and required in most cases (87.3%) less than 30 minutes. Most patients reported being moderately or highly satisfied with the information provided (75%). The degree of satisfaction seems significantly related to patients’ younger age, a longer time dedicated to disclose the diagnosis, a CIS diagnosis, and, above all, tailored information and an adequate emotional support. Conclusion. Most patients reported a good degree of satisfaction about the communication of MS or CIS diagnosis. A fruitful relationship between patient and neurologist is essential to obtain a better acceptance of the disease, patients’ compliance with chronic treatments and to improve patients’ quality of life.