Chronic sorrow and quality of life in patients with multiple sclerosis

The overall aim of this thesis was to increase our understanding and knowledge of patients’ experiences of living with multiple sclerosis (MS). A mixed-method design was used, including both qualitative and quantitative methods. Thirty-one immunologically treated MS patients were randomly selected and matched with patients without immunological treatment. Matching criteria were gender, impairment, time since diagnosis and age. One patient dropped out and therefore the final sample consisted of 61 patients. All 61 were interviewed (Studies I, III and IV) and completed the 36-item Short Form health survey questionnaire (SF-36), the Subjective estimation of Quality of Life questionnaire (SQoL), the Self-reported Impairment Check-list (SIC) (Study II) and the Montgomery–Asberg Depression Rating Scale questionnaire (MADRS) (Study III). The interviews were subjected to content analysis. Initial symptoms and being diagnosed with MS were described in terms of becoming vulnerable and remaining in that vulnerability long after the diagnosis. Eventually the patients were able to manage this emotional distress and acquired strength in their illness situation (Study I). In the matched analysis, 29 pairs of patients were included after internal drop-out. There were no statistically significant differences between the treatment and control groups. Concerning the total group of 61 patients, the self-reported impairment check-list showed that they had various problems of impairment, most evident in balance and walking. The score on health-related quality of life (SF-36) was reduced, disclosing a negative influence on vitality, physical role and function. However, subjective quality of life (SQoL) was not reduced, showing that the patients estimated their well-being to be quite unaffected (Study II). Thirty-eight of the 61 patients (62%) experienced chronic sorrow (Study III). The group were not depressed in general, only four having mild symptoms of depression, revealing that chroni