The payer's perspective: What is the burden of MS and how should the ă patient's perspective be integrated in health technology assessment ă conducted for taking decisions on access to care and treatment?
Résumé
Background: In Europe, there exists considerable variability in access ă to care and treatment for multiple sclerosis (MS). ă Objectives: To improve this situation, we identified key issues payers ă should take into account when making decisions on access to care and ă treatment for MS. We also give an overview of the different dimensions ă determining total MS burden and discuss why it is key to integrate the ă patient's perspective in estimating this burden. ă Results: The total burden of MS relates to three dimensions: clinical, ă humanistic and economic. Although the clinical burden is extensively ă studied, crucial information is still missing about MS pathophysiology, ă how MS-related symptoms will develop during the disease course and which ă patients will progress more rapidly. With regard to the humanistic ă burden, information on patient-reported quality of life systematically ă collected in clinical trials for registration purposes is still scarce. ă Early engagement between pharmaceutical companies, the European ă Medicines Agency and health technology agencies to prospectively ă identify key evidence needs for the regulatory and reimbursement ă processes is required as a first step towards more equal access to care ă and treatment in MS in Europe. Patients' expectations regarding ă treatment outcomes should be better researched and integrated into ă decision-making and patients should be counselled in this process.