“So at least now I know how to deal with things myself, what I can do if it gets really bad again”—experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study

  1. Dorr, Anne ORCID logo
  2. Hebben, Fabian ORCID logo
  3. Dillen, Kim
  4. Dunkl, Veronika
  5. Goereci, Yasemin
  6. Voltz, Raymond
  7. Löcherbach, Peter
  8. Warnke, Clemens ORCID logo
  9. Golla, Heidrun ORCID logo
  10. on behalf of the COCOS-MS trial group represented by Martin Hellmich
  11. Müller, Dirk
  12. Hobus, Dorthe
  13. Bonmann, Eckhard
  14. Schwartzkopff, Franziska
  15. Nelles, Gereon
  16. Palmbach, Gundula
  17. Temmes, Herbert
  18. Franke, Isabel
  19. Haas, Judith
  20. Strupp, Julia
  21. Gerbershagen, Kathrin
  22. Becker-Peters, Laura
  23. Burghaus, Lothar
  24. Hellmich, Martin
  25. Paus, Martin
  26. Ungeheuer, Solveig
  27. Kochs, Sophia
  28. Stock, Stephanie
  29. Joist, Thomas
  30. Limmroth, Volker

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1000 Titel
  • “So at least now I know how to deal with things myself, what I can do if it gets really bad again”—experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study
1000 Autor/in
  1. Dorr, Anne |
  2. Hebben, Fabian |
  3. Dillen, Kim |
  4. Dunkl, Veronika |
  5. Goereci, Yasemin |
  6. Voltz, Raymond |
  7. Löcherbach, Peter |
  8. Warnke, Clemens |
  9. Golla, Heidrun |
  10. on behalf of the COCOS-MS trial group represented by Martin Hellmich |
  11. Müller, Dirk |
  12. Hobus, Dorthe |
  13. Bonmann, Eckhard |
  14. Schwartzkopff, Franziska |
  15. Nelles, Gereon |
  16. Palmbach, Gundula |
  17. Temmes, Herbert |
  18. Franke, Isabel |
  19. Haas, Judith |
  20. Strupp, Julia |
  21. Gerbershagen, Kathrin |
  22. Becker-Peters, Laura |
  23. Burghaus, Lothar |
  24. Hellmich, Martin |
  25. Paus, Martin |
  26. Ungeheuer, Solveig |
  27. Kochs, Sophia |
  28. Stock, Stephanie |
  29. Joist, Thomas |
  30. Limmroth, Volker |
1000 Verlag BioMed Central
1000 Erscheinungsjahr 2024
1000 Publikationstyp
  1. Artikel |
1000 Online veröffentlicht
  • 2024-04-10
1000 Erschienen in
1000 Quellenangabe
  • 24(1):453
1000 Copyrightjahr
  • 2024
1000 Lizenz
1000 Verlagsversion
  • https://doi.org/10.1186/s12913-024-10851-1 |
  • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11007872/ |
1000 Publikationsstatus
1000 Begutachtungsstatus
1000 Sprache der Publikation
1000 Abstract/Summary
  • <jats:title>Abstract</jats:title><jats:sec> <jats:title>Background</jats:title> <jats:p>Persons with severe Multiple Sclerosis (PwsMS) face complex needs and daily limitations that make it challenging to receive optimal care. The implementation and coordination of health care, social services, and support in financial affairs can be particularly time consuming and burdensome for both PwsMS and caregivers. Care and case management (CCM) helps ensure optimal individual care as well as care at a higher-level. The goal of the current qualitative study was to determine the experiences of PwsMS, caregivers and health care specialists (HCSs) with the CCM.</jats:p> </jats:sec><jats:sec> <jats:title>Methods</jats:title> <jats:p>In the current qualitative sub study, as part of a larger trial, in-depth semi-structured interviews with PwsMS, caregivers and HCSs who had been in contact with the CCM were conducted between 02/2022 and 01/2023. Data was transcribed, pseudonymized, tested for saturation and analyzed using structuring content analysis according to Kuckartz. Sociodemographic and interview characteristics were analyzed descriptively.</jats:p> </jats:sec><jats:sec> <jats:title>Results</jats:title> <jats:p>Thirteen PwsMS, 12 caregivers and 10 HCSs completed interviews. Main categories of CCM functions were derived deductively: (1) gatekeeper function, (2) broker function, (3) advocacy function, (4) outlook on CCM in standard care. Subcategories were then derived inductively from the interview material. 852 segments were coded. Participants appreciated the CCM as a continuous and objective contact person, a person of trust (92 codes), a competent source of information and advice (on MS) (68 codes) and comprehensive cross-insurance support (128 codes), relieving and supporting PwsMS, their caregivers and HCSs (67 codes).</jats:p> </jats:sec><jats:sec> <jats:title>Conclusions</jats:title> <jats:p>Through the cross-sectoral continuous support in health-related, social, financial and everyday bureaucratic matters, the CCM provides comprehensive and overriding support and relief for PwsMS, caregivers and HCSs. This intervention bears the potential to be fine-tuned and applied to similar complex patient groups.</jats:p> </jats:sec><jats:sec> <jats:title>Trial registration</jats:title> <jats:p>The study was approved by the Ethics Committee of the University of Cologne (#20–1436), registered at the German Register for Clinical Studies (DRKS00022771) and in accordance with the Declaration of Helsinki.</jats:p> </jats:sec>
1000 Sacherschließung
lokal Multiple Sclerosis/therapy [MeSH]
lokal Qualitative research
lokal Case Management [MeSH]
lokal Severe multiple sclerosis
lokal Humans [MeSH]
lokal Long-Term Care [MeSH]
lokal Support
lokal Caregivers [MeSH]
lokal Health care specialist
lokal Cross-sectoral
lokal Care and case management
lokal Social Work [MeSH]
lokal Caregivers
lokal Qualitative Research [MeSH]
lokal Research
lokal Patients
lokal Advocacy
lokal Long-term
1000 Fächerklassifikation (DDC)
1000 Liste der Beteiligten
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  2. Universitätsklinikum Köln |
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