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Background <p>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.</p> Methods <p>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 &lt; 0.05) and cross tables. The data were analyzed in accordance with the modified intention-to-treat principle.</p> Results <p>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 (<i>p</i> = 0.039), medical, nursing and therapeutic care (<i>p</i> = 0.008), and increased autonomy regarding the pursuit of hobbies and interests (<i>p</i> = 0.002). Across 30 sub-domains, on average 6.3 improvements and 1.6 deteriorations per sub-domains were recorded on PwsMSs’ side.</p> Conclusions <p>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.</p> Trial registration <p>German Register for Clinical Studies (DRKS) (DRKS00022771, 11<sup>th</sup> January 2021).</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年3月14日

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  • Anne Müller,
  • Veronika Dunkl,
  • Wiebke Müller,
  • Martin Hellmich,
  • Peter Löcherbach,
  • Raymond Voltz,
  • Kim Dillen,
  • Yasemin Goereci,
  • Clemens Warnke,
  • Heidrun Golla,
  • Dirk Müller,
  • Daniele Civello,
  • Dorthe Hobus,
  • Eckhard Bonmann,
  • Franziska Schwartzkopff,
  • Gereon Nelles,
  • Gundula Palmbach,
  • Herbert Temmes,
  • Isabel Franke,
  • Judith Haas,
  • Julia Strupp,
  • Kathrin Gerbershagen,
  • Laura Becker Peters,
  • Lothar Burghaus,
  • Carola Hagedorn,
  • Martin Hellmich,
  • Wiebke Müller,
  • Martin Paus,
  • Solveig Ungeheuer,
  • Sophia Kochs,
  • Stephanie Stock,
  • Thomas Joist,
  • Volker Limmroth,
  • Jule Pröh,
  • Julia Klein,
  • Merle Krüger

摘要

Background

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.

Methods

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.

Results

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.

Conclusions

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.

Trial registration

German Register for Clinical Studies (DRKS) (DRKS00022771, 11th January 2021).