How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)

<h4>Background</h4> Multiple sclerosis (MS) is the most common autoimmune inflammatory disease of the central nervous system in Europe, often causing severe physical, cognitive and emotional impairments. Currently, it is unclear whether the healthcare provisions of people with MS (PwMS)...

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Autores principales:	Kathrin Krüger, Lara Marleen Fricke, Elise-Marie Dilger, Annett Thiele, Kristina Schaubert, Dyon Hoekstra, Fedor Heidenreich, Anna Levke Brütt, Jona T. Stahmeyer, Alexander Stahmann, Anna-Lena Röper, Klaus-Peter Kubiak, Melissa Hemmerling, Anja Grau, Kerstin Eichstädt, Sabine Behrens, Christian Krauth
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2021
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/295734c074a04964842256231dfed3f0
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spelling	oai:doaj.org-article:295734c074a04964842256231dfed3f02021-11-18T08:14:32ZHow is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)1932-6203https://doaj.org/article/295734c074a04964842256231dfed3f02021-01-01T00:00:00Zhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8584984/?tool=EBIhttps://doaj.org/toc/1932-6203<h4>Background</h4> Multiple sclerosis (MS) is the most common autoimmune inflammatory disease of the central nervous system in Europe, often causing severe physical, cognitive and emotional impairments. Currently, it is unclear whether the healthcare provisions of people with MS (PwMS) are in line with the recommendations for treatment based on guidelines or patients’ needs. The main objectives of the study are as follows: (a) to investigate how well PwMS are treated; and (b) to develop a needs-oriented, patient-centred care model. <h4>Methods</h4> This mixed-methods study focuses on adult PwMS living in Lower Saxony, a federal state in Germany. The qualitative study comprises focus groups with PwMS, physicians and people involved in the healthcare process as well as a future workshop. The quantitative study comprises a cross-sectional online survey and addresses the patient-relevant outcomes and needs, as previously determined by literature searches and focus groups. It will be administered to all PwMS who are insured by the statutory health insurance company involved in the project (n~7,000). The survey data will be linked to the longitudinal secondary data from the statutory health insurance company and data from the German MS registry where available. The linked and single data sources will be statistically analysed. <h4>Discussion</h4> By comprehensively comparing the current healthcare provisions with the needs and requirements of PwMS, the strengths and weaknesses of the overall healthcare process and provision of assistive devices can be identified. The barriers and facilitators of the health service providers and their impact on daily life will be explored (qualitative analyses). Reliable recommendations for improvements will be given based on a study population drawn from the largest statutory health insurance company in Lower Saxony (quantitative analyses). However, the inherent advantages and limitations of the qualitative and quantitative research approaches need to be considered. <h4>Trial registration</h4> The study is registered at German Clinical Trials Register DRKS00021741.Kathrin KrügerLara Marleen FrickeElise-Marie DilgerAnnett ThieleKristina SchaubertDyon HoekstraFedor HeidenreichAnna Levke BrüttJona T. StahmeyerAlexander StahmannAnna-Lena RöperKlaus-Peter KubiakMelissa HemmerlingAnja GrauKerstin EichstädtSabine BehrensChristian KrauthPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 16, Iss 11 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Kathrin Krüger Lara Marleen Fricke Elise-Marie Dilger Annett Thiele Kristina Schaubert Dyon Hoekstra Fedor Heidenreich Anna Levke Brütt Jona T. Stahmeyer Alexander Stahmann Anna-Lena Röper Klaus-Peter Kubiak Melissa Hemmerling Anja Grau Kerstin Eichstädt Sabine Behrens Christian Krauth How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)
description	<h4>Background</h4> Multiple sclerosis (MS) is the most common autoimmune inflammatory disease of the central nervous system in Europe, often causing severe physical, cognitive and emotional impairments. Currently, it is unclear whether the healthcare provisions of people with MS (PwMS) are in line with the recommendations for treatment based on guidelines or patients’ needs. The main objectives of the study are as follows: (a) to investigate how well PwMS are treated; and (b) to develop a needs-oriented, patient-centred care model. <h4>Methods</h4> This mixed-methods study focuses on adult PwMS living in Lower Saxony, a federal state in Germany. The qualitative study comprises focus groups with PwMS, physicians and people involved in the healthcare process as well as a future workshop. The quantitative study comprises a cross-sectional online survey and addresses the patient-relevant outcomes and needs, as previously determined by literature searches and focus groups. It will be administered to all PwMS who are insured by the statutory health insurance company involved in the project (n~7,000). The survey data will be linked to the longitudinal secondary data from the statutory health insurance company and data from the German MS registry where available. The linked and single data sources will be statistically analysed. <h4>Discussion</h4> By comprehensively comparing the current healthcare provisions with the needs and requirements of PwMS, the strengths and weaknesses of the overall healthcare process and provision of assistive devices can be identified. The barriers and facilitators of the health service providers and their impact on daily life will be explored (qualitative analyses). Reliable recommendations for improvements will be given based on a study population drawn from the largest statutory health insurance company in Lower Saxony (quantitative analyses). However, the inherent advantages and limitations of the qualitative and quantitative research approaches need to be considered. <h4>Trial registration</h4> The study is registered at German Clinical Trials Register DRKS00021741.
format	article
author	Kathrin Krüger Lara Marleen Fricke Elise-Marie Dilger Annett Thiele Kristina Schaubert Dyon Hoekstra Fedor Heidenreich Anna Levke Brütt Jona T. Stahmeyer Alexander Stahmann Anna-Lena Röper Klaus-Peter Kubiak Melissa Hemmerling Anja Grau Kerstin Eichstädt Sabine Behrens Christian Krauth
author_facet	Kathrin Krüger Lara Marleen Fricke Elise-Marie Dilger Annett Thiele Kristina Schaubert Dyon Hoekstra Fedor Heidenreich Anna Levke Brütt Jona T. Stahmeyer Alexander Stahmann Anna-Lena Röper Klaus-Peter Kubiak Melissa Hemmerling Anja Grau Kerstin Eichstädt Sabine Behrens Christian Krauth
author_sort	Kathrin Krüger
title	How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)
title_short	How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)
title_full	How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)
title_fullStr	How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)
title_full_unstemmed	How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)
title_sort	how is and how should healthcare for people with multiple sclerosis in germany be designed?–the rationale and protocol for the mixed-methods study multiple sclerosis–patient-oriented care in lower saxony (ms-pov)
publisher	Public Library of Science (PLoS)
publishDate	2021
url	https://doaj.org/article/295734c074a04964842256231dfed3f0
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How is and how should healthcare for people with multiple sclerosis in Germany be designed?–The rationale and protocol for the mixed-methods study Multiple Sclerosis–Patient-Oriented Care in Lower Saxony (MS-PoV)

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