Universität zu Köln

Müller, Anne ORCID: 0000-0002-2456-2492, Hebben, Fabian ORCID: 0009-0003-6401-3433, Dillen, Kim ORCID: 0000-0002-0270-3338, Dunkl, Veronika ORCID: 0000-0001-6885-7666, Goereci, Yasemin ORCID: 0000-0003-3330-8231, Voltz, Raymond ORCID: 0000-0002-4761-3395, Löcherbach, Peter, Warnke, Clemens ORCID: 0000-0002-3510-9255, Golla, Heidrun ORCID: 0000-0002-4403-630X, Müller, Dirk ORCID: 0000-0002-5576-0192, Hobus, Dorthe, Bonmann, Eckhard ORCID: 0000-0003-4432-363X, Schwartzkopff, Franziska, Nelles, Gereon ORCID: 0000-0002-5205-0611, Palmbach, Gundula ORCID: 0000-0001-9888-629X, Temmes, Herbert, Franke, Isabel, Haas, Judith, Strupp, Julia ORCID: 0000-0003-3135-2693, Gerbershagen, Kathrin, Becker-Peters, Laura, Burghaus, Lothar ORCID: 0000-0002-7883-190X, Hellmich, Martin ORCID: 0000-0001-5174-928X, Paus, Martin, Ungeheuer, Solveig, Kochs, Sophia, Stock, Stephanie ORCID: 0000-0002-1726-9300, Joist, Thomas and Limmroth, Volker (2024). “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. BMC Health Services Research, 24 (1). pp. 1-15. Springer Nature. ISSN 1472-6963

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Abstract

[Artikel-Nr.: 453] Background: 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. Methods: 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. Results: 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). Conclusions: 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. Trial registration: 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.

Item Type:	Article
Creators:	Creators Email ORCID ORCID Put Code Müller, Anne UNSPECIFIED https://orcid.org/0000-0002-2456-2492 UNSPECIFIED Hebben, Fabian UNSPECIFIED https://orcid.org/0009-0003-6401-3433 UNSPECIFIED Dillen, Kim UNSPECIFIED https://orcid.org/0000-0002-0270-3338 UNSPECIFIED Dunkl, Veronika UNSPECIFIED https://orcid.org/0000-0001-6885-7666 UNSPECIFIED Goereci, Yasemin UNSPECIFIED https://orcid.org/0000-0003-3330-8231 UNSPECIFIED Voltz, Raymond UNSPECIFIED https://orcid.org/0000-0002-4761-3395 UNSPECIFIED Löcherbach, Peter UNSPECIFIED UNSPECIFIED UNSPECIFIED Warnke, Clemens UNSPECIFIED https://orcid.org/0000-0002-3510-9255 UNSPECIFIED Golla, Heidrun UNSPECIFIED https://orcid.org/0000-0002-4403-630X UNSPECIFIED Müller, Dirk UNSPECIFIED https://orcid.org/0000-0002-5576-0192 UNSPECIFIED Hobus, Dorthe UNSPECIFIED UNSPECIFIED UNSPECIFIED Bonmann, Eckhard UNSPECIFIED https://orcid.org/0000-0003-4432-363X UNSPECIFIED Schwartzkopff, Franziska UNSPECIFIED UNSPECIFIED UNSPECIFIED Nelles, Gereon UNSPECIFIED https://orcid.org/0000-0002-5205-0611 UNSPECIFIED Palmbach, Gundula UNSPECIFIED https://orcid.org/0000-0001-9888-629X UNSPECIFIED Temmes, Herbert UNSPECIFIED UNSPECIFIED UNSPECIFIED Franke, Isabel UNSPECIFIED UNSPECIFIED UNSPECIFIED Haas, Judith UNSPECIFIED UNSPECIFIED UNSPECIFIED Strupp, Julia UNSPECIFIED https://orcid.org/0000-0003-3135-2693 UNSPECIFIED Gerbershagen, Kathrin UNSPECIFIED UNSPECIFIED UNSPECIFIED Becker-Peters, Laura UNSPECIFIED UNSPECIFIED UNSPECIFIED Burghaus, Lothar UNSPECIFIED https://orcid.org/0000-0002-7883-190X UNSPECIFIED Hellmich, Martin UNSPECIFIED https://orcid.org/0000-0001-5174-928X UNSPECIFIED Paus, Martin UNSPECIFIED UNSPECIFIED UNSPECIFIED Ungeheuer, Solveig UNSPECIFIED UNSPECIFIED UNSPECIFIED Kochs, Sophia UNSPECIFIED UNSPECIFIED UNSPECIFIED Stock, Stephanie UNSPECIFIED https://orcid.org/0000-0002-1726-9300 UNSPECIFIED Joist, Thomas UNSPECIFIED UNSPECIFIED UNSPECIFIED Limmroth, Volker UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-815357
Identification Number:	10.1186/s12913-024-10851-1
Journal or Publication Title:	BMC Health Services Research
Volume:	24
Number:	1
Page Range:	pp. 1-15
Number of Pages:	15
Date:	10 April 2024
Publisher:	Springer Nature
ISSN:	1472-6963
Language:	English
Faculty:	Faculty of Medicine
Divisions:	Faculty of Medicine > Neurologie > Klinik und Poliklinik für Neurologie Faculty of Medicine > Palliativmedizin > Zentrum für Palliativmedizin Faculty of Medicine > Weitere > Centrum für integrierte Onkologie (CIO) Faculty of Medicine > Weitere > Zentrum für Versorgungsforschung Köln
Subjects:	Medical sciences Medicine
Uncontrolled Keywords:	Keywords Language Long-term ; Cross-sectoral ; Advocacy, Care and case management ; Qualitative research ; Patients ; Caregivers ; Health care specialist ; Severe multiple sclerosis ; Support English
['eprint_fieldname_oa_funders' not defined]:	Publikationsfonds UzK
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/81535