PREferences related to Quality Of LIfe attributes in Multiple Sclerosis: patient and health professionals’ views - Finanziamento dell’Unione Europea – NextGenerationEU – missione 4, componente 2, investimento 1.1.

Multiple sclerosis (MS) is a chronic disease bringing to a broad spectrum of physical, social and psychological effects. Previous studies showed that health related quality of life (HRQOL) dimensions are not all equally important for people with MS (PwMS). Information about HRQOL preferences allows physicians to better understand patient expectations about the possible changes during MS, and let them make appropriate clinical decisions. The main aims of the study are: 1) To identify a set of attributes that define the HRQOL construct; 2) To measure what matters to patients in terms of utility preferences; 3) To assess the influence of socio-demographic, clinical and psychological characteristics with preference priorities; and 4) To ascertain health professionals (HPs)’ perception regarding their patients’ preference patterns. This is a prospective, multi-center, non-interventional study involving PwMS and HPs, consisting of two phases. Phase 1 - Identification of a set of HRQOL attributes. A literature review will be followed by a one-day consensus meeting with PwMS, PwMS’s significant others, neurologists, and other HPs. At the end, a set of HRQOL attributes will be identified. Phase 2 - Assessment of patients’ and HPs’ preferences. A minimum of 600 PwMS will be recruited from those attending the MS center for a scheduled visit. Consenting PwMS will fill out an ad hoc socio-demographic and clinical questionnaire, and seven inventories assessing HRQOL, personality, perceived social support, and self-efficacy and coping style. PwMS preferences for different HRQOL dimensions will be assessed using a Discrete Choice Experiment (DCE). The DCE will be made up of several scenarios in which two health profiles will be presented. For each scenario, respondents will answer which hypothetical person was, in their opinion, in the best health state. Using the same list of HRQOL attributes that describe the DCE health profiles, PwMS will rank the attributes of their own HRQOL in order of importance-from the most important to the least important. A sample of at least 65 neurologists and 65 other MS HPs will be recruited. They will be invited to complete an online questionnaire including personal information, center’s features, and then, in order to evaluate their notion of patients’ preference patterns, they will be asked to do the same HRQOL attribute ranking as did for PwMS. DCE data will be analyzed using a finite mixture logit model, while the ranking of HRQOL attributes given by PwMS and HPs will be analyzed through Z-tests and odds ratios. This study will help identify those HRQOL dimensions that are prioritized by PwMS, and to compare them with those prioritized by their HPs. These data will help clinicians to provide a care that is better aligned to PwMS needs and priorities.