Abstract
BackgroundMultiple sclerosis (MS), the most common neurological disease that causes disability in youth, does not only affect physical functions but is also associated with cognitive impairment, fatigue, depression, and anxiety and can significantly impact health-related quality of life (HRQoL). Since MS is generally diagnosed at a young age—a period of great significance for personal, relational, and professional development—adaptation can become highly challenging. Therefore, enhancing the competence of young people to adaptively cope with these potential challenges is of utmost importance in order to promote their potentialities and talents. It has been shown that psychological interventions targeting MS patients can enhance resilience and HRQoL and that regular physical activity (PA) and social engagement can improve psychological well-being. However, literature on the development of global interventions based on the bio-psycho-social model of the disease is missing. Even less attention has been paid to interventions dedicated to young adults with MS (YawMS) and to the involvement of patients in the development of such programs.AimsIn collaboration with MS patients, this study aims to develop a bio-psycho-social intervention (ESPRIMO) for YawMS, aiming to improve their HRQoL and to explore its feasibility, acceptability, and effects.MethodsTo tailor the intervention to the specific needs of YawMS, “patient engagement principles” will be adopted in the co-creation phase, performing a web survey and focus groups with patients and healthcare professionals. In the intervention phase, a pilot sample of 60 young adults with MS will be enrolled. The co-created intervention, composed of group sessions over a 12-week period, will cover psycho-social strategies and include physical activities. Adopting a longitudinal, pre–post evaluation design, self-report questionnaires measuring HRQoL and other bio-psycho-social features (e.g., resilience, well-being, mindfulness traits, self-efficacy, perceived social support, psychological symptoms, illness perception, committed action, fatigue, attitudes, subjective norms, perceived behavioral control, motivation, perception of autonomy support for PA, barriers and intentions to PA) will be administered, the quantity and quality of PA will be measured, and a questionnaire developed by the authors will be used to evaluate the feasibility and acceptability of the ESPRIMO intervention.
Highlights
Social activities involving patients with multiple sclerosis (MS) and the general population will be proposed in order to reduce stigma and exclusion and facilitate the creation of good relationships, the experience of positive emotions, and the sense of belonging
Patients will be recruited in clinical centers and through MS associations, balanced by gender and clinical characteristics as much as possible, according to the following inclusion criteria: age 18–45 years, MS diagnosis, Italian speakers, and signed electronic informed consent
As stated in the introduction, considering the challenges imposed by MS in the delicate phase of young adulthood, planning care and early interventions for this age group is of utmost importance for their well-being and for reaching their potentials
Summary
Being the most common neurological disease that causes disability in young adults (Koch-Henriksen and Sørensen, 2010; Dimitrov and Turner, 2014), multiple sclerosis (MS) interferes with physical functions, such as gait, vision, and sensory abilities, and is often associated with cognitive impairment, fatigue, symptoms of depression and anxiety (Grossman et al, 2010; Narayanan et al, 2015; Boeschoten et al, 2017; Rainone et al, 2017; Tobin, 2019), and reduced health-related quality of life (HRQoL) (Grossman et al, 2010; Pappalardo et al, 2017; Rainone et al, 2017). Multiple sclerosis (MS), the most common neurological disease that causes disability in youth, does affect physical functions but is associated with cognitive impairment, fatigue, depression, and anxiety and can significantly impact health-related quality of life (HRQoL). Even less attention has been paid to interventions dedicated to young adults with MS (YawMS) and to the involvement of patients in the development of such programs
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