A 10-year longitudinal population-based study of functioning, working capacity, health-related quality of life, patient satisfaction and use of health-care in people with multiple sclerosis
The overall aim in this project was to explore the occurrence of disability, health related quality
of life (HRQL), use of care and patient satisfaction with care, and to explore the importance of different variables to predict the occurrence of disability, HRQL and use of care in PwMS in a long-term longitudinal perspective.
The project is a 10-year follow-up of a population-based sample of PwMS in Stockholm County. Information on disease-specific variables, contextual factors, various aspects of disability, HRQL and patient satisfaction with care were collected by home visits at baseline and at the 10-year follow-up. Information regarding time and cause of death was collected from the National Board of Health and Welfare. Information regarding use of care was collected from the Stockholm County Council.
The results demonstrated that there was no change in occurrence of PwMS with cognitive impairment, depressive symptoms or restrictions in social/lifestyle activities from baseline to the 10-year follow-up. There was an increase in occurrence of PwMS with limitation in manual dexterity, walking ability and activities of daily living over time. Overall, HRQL was quite stable over time. The use of care over time was extensive, including primary care, hospital outpatient and inpatient care. Higher disease severity was an important variable in predicting disability. Low coping capacity, depressive symptoms and cognitive impairment were important variables in predicting HRQL. Low coping capacity, manual dexterity and progress in disease severity were important variables in predicting the use of care. Satisfaction with care was quite stable over time.
The results demonstrate that the vast majority of the PwMS will face disability in many areas during the MS trajectory. For a chronic disease like MS, symptom management needs to be an essential part of the care. The results also demonstrate that there is room for improvement regarding the organisation of the comprehensive care used by PwMS.
Participation in social/lifestyle activities in people with multiple sclerosis: Changes across 10 years and predictors of sustained participation.
Johansson S, Ytterberg C, Gottberg K, Holmqvist LW, von Koch L, Conradsson D
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Activity limitations and participation restrictions in people with multiple sclerosis: a detailed 10-year perspective.
Conradsson D, Ytterberg C, Engelkes C, Johansson S, Gottberg K
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Longitudinal changes in sickness absence and disability pension, and associations between disability pension and disease-specific and contextual factors and functioning, in people with multiple sclerosis.
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J. Neurol. Sci. 2016 Aug;367():319-25
Individual Face-to-Face Cognitive Behavioural Therapy in Multiple Sclerosis: A Qualitative Study.
Gottberg K, Chruzander C, Backenroth G, Johansson S, Ahlström G, Ytterberg C
J Clin Psychol 2016 07;72(7):651-62
A single-group pilot feasibility study of cognitive behavioural therapy in people with multiple sclerosis with depressive symptoms.
Chruzander C, Gottberg K, Ytterberg C, Backenroth G, Fredrikson S, Widén Holmqvist L, et al
Disabil Rehabil 2016 12;38(24):2383-91
A 10-year population-based study of people with multiple sclerosis in Stockholm, Sweden: use of and satisfaction with care and the value of different factors in predicting use of care.
Chruzander C, Johansson S, Gottberg K, Einarsson U, Hillert J, Holmqvist LW, et al
BMC Health Serv Res 2015 Oct;15():480
A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: changes in health-related quality of life and the value of different factors in predicting health-related quality of life.
Chruzander C, Ytterberg C, Gottberg K, Einarsson U, Widén Holmqvist L, Johansson S
J. Neurol. Sci. 2014 Apr;339(1-2):57-63
A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: changes in disability and the value of different factors in predicting disability and mortality.
Chruzander C, Johansson S, Gottberg K, Einarsson U, Fredrikson S, Holmqvist LW, et al
J. Neurol. Sci. 2013 Sep;332(1-2):121-7