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Quality of life and impairment in patients with multiple sclerosis
Örebro University, School of Health and Medical Sciences.
Hälsohögskolan Jönköping.
2005 (English)In: Journal of Neurology, Neurosurgery and Psychiatry, ISSN 0022-3050, E-ISSN 1468-330X, Vol. 76, no 1, 64-69 p.Article in journal (Refereed) Published
Abstract [en]

Objectives: The aims of this study were to describe the quality of life in patients with multiple sclerosis (MS) given immunological treatment and in those not given immunological treatment and to investigate the relationship between impairment and quality of life.

Methods: Twenty nine patients given immunological treatment were matched with the same number of patients not given such treatment. Matching variables were sex, Kurtzke’s Expanded Disability Status Scale (EDSS), years since diagnosis, and age (total n = 58). The patients were interviewed using the self-reported impairment checklist and they answered two questionnaires on quality of life, the 36-Item Short-Form Health Survey (SF-36) and the Subjective Estimation of Quality of Life (SQoL).

Results: The self-reported impairment checklist captured a more differentiated picture of the patients’ symptoms of MS than the EDSS. Health related quality of life was markedly reduced, while the subjective quality of life was less affected. There was a stronger association between self-reported ratings of impairment and health related quality of life on the SF-36 than between impairment and global ratings of quality of life on the SQoL. Subjective quality of life on the SQoL was not directly dependent on impairment expressed in physical limitations. There were no statistically significant differences between the treated and untreated groups. A non-significant trend towards better health related quality of life was found in favour of the treated group with respect to emotional role, physical role, and social function on the SF-36.

Conclusions: The self-reported impairment checklist and SF-36 proved to be valuable complements to the well established EDSS in describing the diverse symptoms of MS. Measuring both health related quality of life and subjective wellbeing provides valuable knowledge about the consequences of MS.

Place, publisher, year, edition, pages
2005. Vol. 76, no 1, 64-69 p.
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-11946DOI: 10.1136/jnnp.2003.029660OAI: oai:DiVA.org:oru-11946DiVA: diva2:353940
Available from: 2010-09-29 Created: 2010-09-29 Last updated: 2017-12-12Bibliographically approved
In thesis
1. Chronic sorrow and quality of life in patients with multiple sclerosis
Open this publication in new window or tab >>Chronic sorrow and quality of life in patients with multiple sclerosis
2007 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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 chronic sorrow is a particular form of emotional distress in MS. Chronic sorrow was experienced in terms of loss of hope, loss of control over the body and loss of integrity and dignity. When the patients could not adequately manage their sorrow and lacked support, they were struggling with their vulnerability. In the successful management of MS, losses and emotional distress are managed in such a way as to enhance personal growth, appreciation and trust in life. The theoretical model of chronic sorrow facilitated the sorting of the empirical data and the linking of these data to theory, showing the usefulness of the model (Study IV).

Place, publisher, year, edition, pages
Örebro: Örebro universitetsbibliotek, 2007. 84 p.
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 12
Keyword
Multiple sclerosis, illness experience, diagnosis experience, impairment, health-related quality of life, subjective quality of life, immunological treatment, chronic sorrow, depression, managing chronic illness, content analysis, well-being
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-846 (URN)91-7668-521-7 (ISBN)
Public defence
2007-02-09, Aulan, Universitetsbiblioteket, Fakultetsgatan 1, Örebro, 13:00
Opponent
Supervisors
Available from: 2007-01-19 Created: 2007-01-19 Last updated: 2017-10-18Bibliographically approved

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Isaksson, Ann-Kristin

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