Self‐assessments and determinants of HRQoL in a German MS population

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Multiple sclerosis (MS) is an immune‐mediated, chronically inflammatory disease of the central nervous system, which can run very differently. In Germany, MS belongs with 1 20 000 to 1 40 000 patients on the one hand to the most common neurological diseases, but is on the other hand by a ratio of about 15 patients per 10 000 inhabitants close to the so‐called orphan diseases.1 The disease is usually diagnosed between 20 and 40 years of age. With a percentage of approximately 70% women are affected twice as often as men, and they suffer more often than men the relapsing‐remitting form (RRMS), in which the primary progressive form (PPMS) predominates.3 MS is not contagious, not fatal, not hereditary, and does not necessarily lead to severe disabilities.4
Therefore, health‐related quality of life (HRQoL) is used as a major outcome measure for assessing health, evaluating treatment, and managing care in MS.7 The particular advantage is that quality of life reflects the individually perceived patient's point of view and thus represents a patient‐reported outcome.9 Against this background, the knowledge which factors are determinants of HRQoL would assist clinicians in choosing the most appropriate interventions.
Several determinants of HRQoL have been identified, with varying strengths of association and including both disease‐specific variables10 and sociodemographic variables.11 However, a general limitation of the larger studies has been the use of generic instruments, although disease‐specific instruments are more suitable for the detection of small changes which are important to clinicians and patients. Other studies were limited by the method of data collection.9
This study was conducted within a large multicenter study on self‐help and self‐help support in Germany, funded by the federal ministry of health, to assess the HRQoL and health‐related coping styles in five indication groups of chronically ill persons (multiple sclerosis, diabetes type 2, prostate cancer, tinnitus, family caregivers of patients with dementia). In this paper, we focus on.

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