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.