A two-year study of people with multiple sclerosis : Aspects of disability, perceived impact, needs and satisfaction with care

Background: Knowledge of the concurrent presence and longitudinal variations in disability in people with multiple sclerosis (MS) is lacking. Furthermore, the perceived impact of MS on health, which takes into account predictors of an increased impact, is not fully investigated. The variation in perceived needs of health-related services and satisfaction with care over time in people with MS has not been explored. Aims: The overall aims of this thesis were to explore functioning and disability, perceived impact of MS on health, perceived needs and satisfaction with care, including variations over two years, in people with MS at an outpatient MS specialist clinic. Methods: The 219 people with MS included were followed up every six months over a two-year period by means of tests and questionnaires regarding cognition, fine hand use, walking, energy, mood, activities of daily living and social activities. Furthermore, evaluation of perceived impact of MS on health was performed, as well as assessment of disease-related variables and contextual factors including sense of coherence, perceived needs and satisfaction with care. Results: Among the people with MS, 49% had cognitive impairment; 76%, limitation in fine hand use; 43%, walking limitation; 67%, fatigue; 29%, depressive symptoms; 44%, limitations in activities of daily living and, in 47%, participation in social activities was restricted. Two or more disabilities were found in 81% and 24% had six or seven disabilities. During the study period, variations were found in the presence of disability and in nearly all functioning. The variations included improvements and declines but no general deterioration was found except for people with a primary progressive disease course. The perceived physical and psychological impact of MS on health also varied during the study period. A period of more than 10 years since diagnosis, cognitive impairment, fatigue and depressive symptoms were independent predictors of increase in perceived physical impact of MS. Weak or moderate sense of coherence, absence of immunomodulatory treatment, fatigue and depressive symptoms were independent predictors of increase in perceived psychological impact of MS. Individual variations were found in both perceived needs and satisfaction with care. People with severe MS had a greater perceived need for almost all healthrelated services and women experienced a need for psychosocial support and counselling to a greater extent than men. Among the different categories of health care staff, people with MS were most satisfied with nurses regarding all dimensions of care. They were least satisfied with the availability of psychosocial support and counselling; as well as of information on social insurance and vocational rehabilitation. Conclusions: A high concurrent presence of disability was found, regardless of disease severity, which highlights the importance of making systematic assessments of the level of functioning, also in individuals with mild MS, in order to identify disabilities. Knowledge of what are the predictors of increase in perceived physical and psychological impact may be used to identify the people with MS who are in need of special attention. Considering the variation in functioning over time, a regular and comprehensive assessment of functioning and disability is desirable, as well as flexibility in the supply of health-related services, and individualised interventions. Improved availability of rehabilitation services including an increase in the supply of psychosocial support and counselling, could probably improve satisfaction with care in people with MS