Brain health - time matters: multiple sclerosis, neuromyelitis optica spectrum disorder (NMOSD), myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) and related conditions. 2024 report.

INTRODUCTION

Multiple sclerosis (MS), neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) are lifelong neuroimmunological diseases that can severely affect many aspects of people's lives. This report expands on our 2015 policy report and includes information about practice standards, emerging science, socioeconomic data analysis and disease understanding, to identify policy recommendations.

METHODS

Suitable experts from healthcare, health economics, policy and patient advocacy formed the author and working groups. The working groups provided expertise and insights to merge scientific and health system knowledge with lived experience. Additional evidence was identified by targeted literature searches or via the working groups. Content and concluding policy recommendations were drafted, reviewed and agreed upon by the authors.

RESULTS

Twenty-nine policy recommendations highlight the policy changes that would optimise care and ensure both socioeconomic and individual benefits. These recommendations include minimizing diagnostic delays or misdiagnosis and intervening early with the most effective treatments to manage the disease. Furthermore, patients should be empowered to manage their conditions and offered holistic care supporting their needs in and beyond healthcare.

CONCLUSIONS

These policy recommendations could ensure the best possible outcomes by a person-centred approach to care, regardless of geographic or economic barriers. The key is to start somewhere, as even small changes can make a difference for individuals, families, societies and economies.