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)

PLoS ONE, Journal Year: 2021, Volume and Issue: 16(11), P. e0259855 - e0259855

Published: Nov. 11, 2021

Background Multiple sclerosis (MS) is the most common autoimmune inflammatory disease of central nervous system in Europe, often causing severe physical, cognitive and emotional impairments. Currently, it unclear whether healthcare provisions people with MS (PwMS) are line recommendations for treatment based on guidelines or patients’ needs. The main objectives study as follows: (a) to investigate how well PwMS treated; (b) develop a needs-oriented, patient-centred care model. Methods This mixed-methods focuses adult living Lower Saxony, federal state Germany. qualitative comprises focus groups PwMS, physicians involved process future workshop. quantitative cross-sectional online survey addresses patient-relevant outcomes needs, previously determined by literature searches groups. It will be administered all who insured statutory health insurance company project (n~7,000). data linked longitudinal secondary from German registry where available. single sources statistically analysed. Discussion By comprehensively comparing current needs requirements strengths weaknesses overall provision assistive devices can identified. barriers facilitators service providers their impact daily life explored (qualitative analyses). Reliable improvements given population drawn largest Saxony (quantitative However, inherent advantages limitations research approaches need considered. Trial registration registered at Clinical Trials Register DRKS00021741 .

Language: Английский

Strengthening the occupational and social participation of multiple sclerosis patients - design of a multicenter, parallel-group randomized controlled trial (MSnetWork-study)

BMC Neurology, Journal Year: 2022, Volume and Issue: 22(1)

Published: Dec. 9, 2022

Abstract Background Multiple Sclerosis is an autoimmune inflammatory disease of the central nervous system that often leads to premature incapacity for work. Therefore, MSnetWork project implements a new form care and pursues goal maintaining or even improving state health MS patients having positive influence on their ability work as well participation in social life. A network neurologists, occupational rehabilitation physicians, psychologists, insurance suppliers provide with targeted services have not previously been part standard care. According patient’s needs treatment options will be identified initiated. Methods The study designed multicenter randomized controlled trial, two parallel groups (randomization at patient level 1:1 allocation ratio, planned N = 950, duration 24 months). After 12 months, control group also receive interventions. primary outcome number sick leave days. Secondary outcomes are health-related quality life, physical, affective cognitive status, fatigue, costs work, costs, out-of-pocket self-efficacy, satisfaction therapy. Intervention effects analyzed by parallel-group comparison between intervention group. Furthermore, long-term within observed pre-post group, before after receiving MSnetWork, performed. Discussion Due multiple approaches patient-centered, multidisciplinary care, can considered complex intervention. design linkage comprehensive, patient-specific secondary data outpatient setting enable evaluation this intervention, both qualitative quantitative level. basic assumption effect prevention reduction patients’ If proves success, could adapted other chronic diseases impact Trial registration trial has retrospectively registered German Clinical Trials Register (DRKS) since 08.07.2022 ID DRKS00025451 .

Language: Английский