Self‐assessments and determinants of HRQ oL in a German MS population
Open accessAbstract
OBJECTIVES: The importance of health-related quality of life (HRQoL) in multiple sclerosis (MS) is widely acknowledged. In 2015, a multicenter study was launched to assess the HRQoL and coping styles of chronically ill persons in Germany. The aims of this paper were (i) to describe how persons affected by MS assess their HRQoL and (ii) find out sociodemographic and disease-specific determinants of HRQoL. MATERIALS AND METHODS: A quantitative survey (optionally per paper-pencil or online) was conducted between March and October 2015 in Germany. Recruitment ways were as follows: Associations of the German Multiple Sclerosis Society (DMSG), medical practices specialized in neurology/MS, hospitals, public events, social networks, and self-help clearinghouses. To measure HRQoL, the Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire and the short form of the Fear of Progression Questionnaire (FoP-Q) were used. RESULTS: A total of 1220 individuals with MS participated in the study. Frequent problems reported were related to activities of daily living as well as sentimental and sexual life. Multiple regression analyses identified disease severity and comorbidity-in different directions (positive and negative)-as the strongest factors in predicting activities of daily living, symptoms, sentimental and sexual life, and reject. The demographic variables sex, age, education, and employment status also have different impact on the HRQoL. CONCLUSIONS: Using HRQoL measures can be feasible outcomes in addition to clinical assessments of MS and other chronic diseases and can help better managing the care. Some challenges have to be taken into account involving patients and the limitations of our empirical study.
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The severity and number of symptoms are significantly associated with decline of quality of life in multiple sclerosis.
“Several studies found a significant association between the severity and number of symptoms and the decline of QoL in MS.33 37–41”
From Quality of life in adults with multiple sclerosis: A systematic review (2020) · cites this paper as [33]
Functional impairment as assessed by the Expanded Disability Status Scale level was one of the leading causes of diminished quality of life in multiple sclerosis.
“Functional impairment as assessed by the Expanded Disability Status Scale (EDSS) level was one of the leading causes of diminished QoL.25–35”
From Quality of life in adults with multiple sclerosis: A systematic review (2020) · cites this paper as [33]
Higher education is a protective factor for quality of life in multiple sclerosis.
“whereas a higher education was a protective factor.33”
From Quality of life in adults with multiple sclerosis: A systematic review (2020) · cites this paper as [33]
The Expanded Disability Status Scale was most employed for assessment of functional impairment.
“The results showed that the EDSS was most employed for assessment of functional impairment.25–35”
From Quality of life in adults with multiple sclerosis: A systematic review (2020) · cites this paper as [33]
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Quality of life in adults with multiple sclerosis: A systematic review
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- Authors
- Nickel, S., von dem Knesebeck, O., & Kofahl, C.
- Affiliations
- University Medical Center Hamburg-Eppendorf (DE)
- Institute of Medical Sociology University Medical Center Hamburg‐Eppendorf Hamburg Germany
- Corresponding author
- Nickel, S.
- ORCID
- Venue
- Acta Neurologica Scandinavica
- Publisher
- Wiley
- Published
- 2017-10-03
- Volume
- 137
- Issue
- 2
- Pages
- 174-180
- ISSN
- 0001-6314 (ISSN-L)
- 1600-0404
- OpenAlex
- W2763855311
- Cited by
- 16
- References
- 29
- Citations by year
- 2025: 4 · 2023: 1 · 2022: 4 · 2021: 2 · 2020: 3 · 2019: 1 · 2018: 1
- FWCI
- 1.07
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Acta Neurologica Scandinavica (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Bundesministerium für Gesundheit (ZMV15‐2514‐SBG‐008)
- Topics
- Health Sciences › Medicine › Pathology and Forensic Medicine › Multiple Sclerosis Research Studies
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- multiple sclerosis, health-related quality of life, self-assessment, disease severity, comorbidities, activities of daily living, sexual life, emotional life, fear of progression, sociodemographic factors, chronic disease, MusiQoL, German patients
- MeSH terms
- Activities of Daily Living, Adaptation, Psychological, Adult, Female, Germany, Humans, Male, Middle Aged, Multiple Sclerosis, Quality of Life, Surveys and Questionnaires, Self-Assessment, Disease Progression
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