Erratum to: Distilling the essence of appraisal: a mixed methods study of people with multiple sclerosis

Background 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. Methods 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. Discussion 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. Trial registration The study is registered at German Clinical Trials Register DRKS00021741.

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Cognitive problems in people with Multiple sclerosis: A mixed methods study on the provision and perceived effectiveness of cognitive rehabilitation

10.26226/morressier.59a3e8b7d462b8028d895936 ◽

2017 ◽

Author(s):

Roshan das Nair

Keyword(s):

Multiple Sclerosis ◽

Mixed Methods ◽

Cognitive Rehabilitation ◽

Mixed Methods Study ◽

Perceived Effectiveness ◽

Cognitive Problems

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A mixed-methods study of cognitive performance in persons with multiple sclerosis: Association between neuropsychological test performance and interviews about daily cognitive functioning

Multiple Sclerosis and Related Disorders ◽

10.1016/j.msard.2021.102911 ◽

2021 ◽

pp. 102911

Author(s):

Nadine Akbar ◽

Marcia Finlayson

Keyword(s):

Multiple Sclerosis ◽

Mixed Methods ◽

Cognitive Functioning ◽

Cognitive Performance ◽

Test Performance ◽

Neuropsychological Test ◽

Mixed Methods Study

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Distilling the essence of appraisal: a mixed methods study of people with multiple sclerosis

Quality of Life Research ◽

10.1007/s11136-015-1119-z ◽

2015 ◽

Vol 25 (4) ◽

pp. 793-805 ◽

Cited By ~ 10

Author(s):

Bruce D. Rapkin ◽

Carolyn E. Schwartz

Keyword(s):

Multiple Sclerosis ◽

Mixed Methods ◽

Mixed Methods Study

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Identification of Factors That Motivate People With Multiple Sclerosis to Participate in Digital Data Collection in Research: Sequential Mixed Methods Study (Preprint)

10.2196/preprints.13295 ◽

2019 ◽

Author(s):

Astrid Karnoe ◽

Lars Kayser ◽

Lasse Skovgaard

Keyword(s):

Multiple Sclerosis ◽

Content Analysis ◽

Mixed Methods ◽

Data Collection ◽

Phase 1 ◽

Mixed Methods Study ◽

Digital Data ◽

Phase 2 ◽

Data Collection Tool ◽

Sequential Mixed Methods

BACKGROUND Digital data collection has the potential to reduce participant burden in research projects that require extensive registrations from participants. To achieve this, a digital data collection tool needs to address potential barriers and motivations for participation. OBJECTIVE This study aimed to identify factors that may affect motivation for participation and adoption of a digital data collection tool in a research project on nutrition and multiple sclerosis (MS). METHODS The study was designed as a sequential mixed methods study with 3 phases. In phase 1, 15 semistructured interviews were conducted in a Danish population of individuals with MS. Interview guide frameworks were based on dimensions from the electronic health literacy framework and the Health Education Impact Questionnaire. Data from phase 1 were analyzed in a content analysis, and findings were used to inform the survey design in phase 2 that validates the results from the content analysis in a larger population. The survey consisted of 14 items, and it was sent to 1000 individuals with MS (response rate 42.5%). In phase 3, participants in 3 focus group interviews discussed how findings from phases 1 and 2 might affect motivation for participation and adoption of the digital tool. RESULTS The following 3 categories related to barriers and incentives for participation were identified in the content analysis of the 15 individual interviews: (1) life with MS, (2) use of technology, and (3) participation and incentives. Phase 1 findings were tested in phase 2’s survey in a larger population (n=1000). The majority of participants were comfortable using smartphone technologies and participated actively on social media platforms. MS symptoms did cause limitations in the use of Web pages and apps when the given pages had screen clutter, too many colors, or too small buttons. Life with MS meant that most participants had to ration their energy levels. Support from family and friends was important to participants, but support could also come in the form of physical aids (walking aids and similar) and digital aids (reminders, calendar functions, and medication management). Factors that could discourage participation were particularly related to the time it would take every day. The biggest motivations for participation were to contribute to research in MS, to learn more about one’s own MS and what affects it, and to be able to exchange experiences with other people with MS. CONCLUSIONS MS causes limitations that put demands on tools developed for digital data collection. A digital data collection tool can increase chances of high adoption rates, but it needs to be supplemented with a clear and simple project design and continuous communication with participants. Motivational factors should be considered in both study design and the development of a digital data collection tool for research.

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