Long-term cross sectoral care and case management for people with severe multiple sclerosis and their caregivers – impact on dimensions of life

Multiple sclerosis is associated with complex individual disease trajectories with a high symptom burden affecting physical, psychological and social life, accompanied by fractured biographies and increased suicide rates. In this complex situation coordinating and providing necessary health and social services and treatments by themselves is often perceived as unmanageable. Care and case management (CCM) aims to ensure optimal care in all dimensions of life. The aim of this sub-study of the COCOS-MS (Communication, coordination and security for people with severe Multiple Sclerosis) trial was to evaluate the CCM intervention at the individual and overall level. The analysis of the long-term cross-sectoral CCM intervention included: descriptive statistical analysis of the individually defined goals and actions taken together with the CCM and the statistical evaluation of the evolution of unmet needs of people with severe MS (PwsMS) and caregivers considering physical health, mental health, self-sufficiency, social situation and participation utilizing the sign test (α < 0.05) and cross tables. The data were analyzed in accordance with the modified intention-to-treat principle. Compliant to protocol, a total of 40 PwsMS were randomized to the intervention group; 18 caregivers of these PwsMS also participated. In 80% the individually set goals were realized during the CCM intervention. They were mostly related to healthcare, organizational issues or general aspects like: receiving information). The participants benefited from the CCM in all assessed dimensions, which was especially reflected in a significant reduction of unmet needs in relation to: MS related physical health (p = 0.039), medical, nursing and therapeutic care (p = 0.008), and increased autonomy regarding the pursuit of hobbies and interests (p = 0.002). Across 30 sub-domains, on average 6.3 improvements and 1.6 deteriorations per sub-domains were recorded on PwsMSs’ side. The CCM is a worthwhile approach to the comprehensive networking of health and social structures. It helps PwsMS to manage their disease and its associated problems more effectively and broadly. Thereby, they gain resources for their life outside their illness. Improved self-sufficiency and social participation lead to a consolidated identity. This could increase feelings of dignity and counteract life-denying thoughts. German Register for Clinical Studies (DRKS) (DRKS00022771, 11th January 2021).