Defining a standard set of health outcomes for patients with relapsing-remitting multiple sclerosis

Abstract

Outcome measurement; Patient-centred care; Relapsing-remitting multiple sclerosis

Medición de resultados; Atención centrada en el paciente; Esclerosis múltiple remitente-recurrente

Mesura de resultats; Atenció centrada en el pacient; Esclerosi múltiple recurrent-remissió

Background Standardizing health outcomes is challenging in clinical management, but it also holds the potential for creating a healthcare system that is both more effective and efficient. The aim of the present study is to define a standardized set of health outcomes for managing Relapsing-Remitting Multiple Sclerosis (RRMS). Methods The project was led and coordinated by a multidisciplinary scientific committee (SC), which included a literature review, a patient-focused group, three nominal group meetings, and two SC meetings. Results 36 outcome variables were included in the standard set: 24 clinical (including weight, smoking habit, comorbidities, disability, mobility, diagnosis of secondary progressive multiple sclerosis, relapsed-related variables, radiological variables, cognitive status and disease-related symptoms), nine treatment-related (pharmacological and non-pharmacological information), and 3 related to the impact of RRMS on the patient's life (quality of life, pregnancy desire, work-related difficulties). In addition, experts also agreed to collect 10 case-mix variables that may affect but cannot be controlled as part of the management of the condition: 4 sociodemographic (age, sex, race, and employment status) and 6 clinical (height, date of diagnosis and first episode, serological status, early symptoms, and number of relapses pre-diagnosis). Conclusion The information provided through the present standard set of outcome variables can improve the management of RRMS and promote patient-centred quality care.

This project was supported by Bristol Myers Squibb.