Abstract
Multiple sclerosis (MS) is an autoimmune, progressive, and potentially debilitating disease of the central nervous system. It is marked by a diverse array of signs and symptoms, which can place a substantial health and socio-economic burden on those affected by it. Many challenges faced by persons with MS, such as impaired mobility, cognitive issues, or susceptibility to infections, can be exacerbated by age-related physiological changes. Thus, aging with MS presents a unique set of challenges, including disease management, work retention and social integration, and overall quality of life. This emphasizes the importance of adopting a multidisciplinary care approach that is custom-tailored to meet the unique requirements of persons aging with MS.
Self-reports provide an effective means of gathering both quantitative and qualitative insights, which are instrumental in shaping practice and policy. The Swiss MS Registry (SMSR) is a longitudinal observational study that involves nearly 3,000 adult individuals with MS in Switzerland and collects self-reported data on a semi-annual basis. The research within this thesis drew upon various SMSR surveys to derive conclusions on the experiences of living and aging with MS.
The first original research presented in this thesis studied the independent associations of aging and MS duration with disability and comorbidities using data of 1,615 SMSR participants. Age was shown to be associated with cardiac diseases, hypertension, and cancer, whereas MS duration exhibited a significant association only with cardiac diseases. Both MS duration and age were independently associated with the presence of at least moderate gait disability. In addition, MS duration was also associated with severe gait disability. The analysis indicated a non-linear increase in the likelihood of experiencing at least moderate gait disability with advancing age. In conclusion, this study suggests that comorbidities may be primarily associated with the aging process, while the severity of gait disability is linked to the duration of MS.
The second study explored the validity and reliability of self-reported disease-modifying therapy (DMT) use and MS types among 446 SMSR participants by comparing their survey responses with health insurance reimbursement approval requests. The agreement between self-reported DMT use and reimbursement approval data was near perfect, while the agreement for self-reported MS types varied from fair to moderate. When using reimbursement approvals as the reference standard, the accuracy of self-reported DMTs was high, but there was a notable possibility of obtaining a false negative report for relapsing-remitting MS. Additionally, age and education level were associated with discrepancies between reported and documented MS types. In conclusion, self-reported DMT use proved to be a reliable and valid source of information, while the results obtained for self-reported MS types possibly reflect the complexity of diagnosing progressive forms of MS and access to DMTs.
The third study investigated the volunteering habits and factors associated with volunteering among 615 SMSR participants. About one-third of participants reported volunteering, most frequently with charities and cultural organizations. Participants with a university degree were more likely to volunteer compared to those with lower education levels. The ability to perform daily activities and being a homemaker were strongly associated with volunteering. Given the general interest in volunteering and the factors associated with it, it is advisable to promote volunteering among those who are willing and able to volunteer, while also informing those facing the challenges of everyday life about accessible and socially inclusive volunteering opportunities.
The final study presented in this thesis examined the social support provided by neurologists to older persons with MS using a mixed methods approach. Employing an established framework for coding social support, informational, esteem, network, emotional, and tangible support were identified as types of support offered by neurologists. Neurologists who offered comprehensive care, provided guidance, and education, while demonstrating characteristics such as attentive listening and understanding, were particularly valued. Continuity of care, including regular consultations, and approachable neurologists who facilitated communication at a distance played a critical role in building a reassuring doctor-patient relationship. Unmet needs were relatively rare and mainly related to issues such as insufficient information about complementary medicine, the need for more empathy, and a better understanding of symptoms such as fatigue. These findings may help neurologists identify areas where support can be improved to effectively meet the needs of their patients.
This thesis offers insights that can help improve the quality of life and care for older persons with MS. It provides valuable information on comorbidities, underscores the role of neurologists in supporting persons with MS, and highlights the importance of accessible social participation. Ultimately, it emphasizes the importance of including the perspectives of persons with MS for a better understanding of the disease and its management.
Stanikic, Mina