People with multiple sclerosis in Stockholm : Aspects of motor and cognitive function, activities of daily living and social/lifestyle activities

Abstract: No population-based, detailed data has been published regarding persons with multiple sclerosis (PwMS) in terms of cognitive function, manual dexterity, general motor capacity, walking capacity, activities of daily living (ADL) and social/lifestyle activities. In addition, there is a lack of knowledge about associations between cognitive function, manual dexterity, walking ability, socio-demographic factors and coping capacity; and independence in ADL and normal frequency of social/lifestyle activities in a population-based sample of PwMS. The overall aim of the thesis - part of the Stockholm MS Study - was to describe and analyze the impact and consequences of MS on functioning in PwMS in Stockholm County, taking into account disease-related data, socio-demographic factors and coping capacity (Papers III-V). Another aim was, via a pilot study, to evaluate the feasibility of collecting data: a) using a comprehensive evaluation package administered in the home environment; and b) on health- and social-care resources, patient satisfaction and impact on family caregivers of PwMS. (Papers I, II) Twenty-six PwMS, from the registry of the MS Center at the Department of Neurology, Karolinska University Hospital, Huddinge, were methodically selected and recruited to the pilot study. Data were collected by home visits including tests and structured interviews. A physiotherapist and a nurse conducted these home visits, (Papers I, III). In the population-based study, data were collected during home visits to 166 randomly selected PwMS in Stockholm County. Cognitive function was assessed by the Mini-Mental State Examination (MMSE), the Free Recall and Recognition of 12 Random Words Test (FRR1 2RWT), and the Symbol Digit Modalities Test (SDMT). Manual dexterity was assessed by the Ninehole Peg Test; global motor capacity by the Lindmark Motor Capacity Assessment (LMCA); and walking capacity by a timed 1 0-meter walk. Independence in ADL was assessed by the Barthel Index (BI), and the Katz Extended ADL Index (KE-ADL); and frequency of social/lifestyle activities by the Frenchay Activities Index. Coping capacity was assessed by the Sense of Coherence scale; and disease severity was assessed by the Expanded Disability Status Scale (EDSS), (Papers III-V). The methods used in the pilot study for testing and interviewing the PwMS at home were found to be easy to administer and were well accepted by the PwMS, irrespective of their level of disease severity or form of living. Calculating resource utilization via use of the computerized register at Stockholm County council was found to be easy to administer. Only minor modifications were found to be necessary to adapt the methods for use in a large population-based study, (Papers I, II). On cognitive tests, 55% (MMSE), 84% (FRR12RWT) and 45% (SDMT) of PwMS scored within the normal range; 27% of PwMS displayed normal manual dexterity, 9% had a maximum motor-capacity score (LMCA) and 8% walked at normal speed. In addition, 52% (n=85) were independent in ADL (BI), 30% (n=50) in instrumental ADL (KE-ADL) and 35% (n=57) reported normal frequency of social/lifestyle activities. Of the variables studied, disease severity of MS and current employment were found to be associated with both motor and cognitive dysfunction. Walking ability and current employment were found to be factors associated with independency in instrumental ADL and normal frequency of social/lifestyle activities. In addition, coping capacity was found to be a factor associated with normal frequency of social/ lifestyle activities, (Papers III-V). In order to determine the impact of MS on functioning, it is appropriate to use a comprehensive evaluation package in the context of home visits. The prevalence of disability in walking ability, manual dexterity, cognitive function, in ADL, and in social/lifestyle activities is high in PwMS in Stockholm. The most important factor associated with independence in ADL and normal frequency of social/lifestyle activities was the ability to walk. Knowledge about the high prevalence in disability and the associated factors, together with evidence-based treatments, is essential in: a) setting priorities and clinical decision-making, b) planning and organizing physiotherapy and other rehabilitation resources and c) for equity in the distribution of available resources for PwMS in Stockholm