Exploring and promoting health-related quality of life using participatory research with young adults with multiple sclerosis: ESPRIMO biopsychosocial interventions

Over recent decades, the rising prevalence of Multiple Sclerosis and the lack of definitive treatments have shifted the focus from solely preventing relapses to enhancing overall health-related quality of life (HRQoL). Multiple sclerosis is a neurodegenerative chronic disease that predominantly affects individuals in their early adulthood and has adverse physical and psychosocial effects. Despite the increasing interest in non-pharmacological interventions, young adults living with multiple sclerosis have received limited attention. An intervention during young adulthood has the potential to prevent emotional distress, improve disease management and foster the fulfilment of young adults’ potential. This thesis sheds new light on the question of how young adults with MS can be involved as empowered stakeholders in the research process to design interventions targeting health-related quality of life. Divided into different chapters, it outlines a co-creation framework for involving patients and relevant stakeholders (e.g., healthcare professionals), explores the needs of young adults living with multiple sclerosis, describes and examines two biopsychosocial interventions (the ESPRIMO intervention and the ESPRIMO - Demons on the Boat program) and explores benefit finding in the aftermath of a stressful situation (i.e., the pandemic). In conclusion, our findings highlight the value of participatory research in addressing care gaps in MS and chronic conditions. Strengthening patient/researcher partnership is crucial for designing feasible and relevant interventions that support the health-related quality of life of young adults with MS. Engaging patients in the design of health interventions represents a promising strategy to recognize and leverage their role as valuable resources for a more attuned, inclusive, and effective healthcare system.