Stroke in the younger : Self-reported impact on work situation, cognitive function, physical function and life satisfaction - A national survey

The majority of people affected by stroke are older however one fifth of all persons with stroke are younger than 65 years. In Sweden the mean age at the time of a stroke is 75 years and about 5 % of those who suffer a stroke are 55 years or younger. The aim of this thesis was to describe and analyse the consequences of stroke in the younger population in terms of experiences of the rehabilitation process, return to work, self-reported physical and cognitive function and life satisfaction. Sex differences, as well as gender specific associations regarding factors of importance for return to work, deteriorated physical ability and satisfaction with life as a whole, were also studied. This thesis was based on an in-depth interview study and self reported data collected from a questionnaire answered by 1068 individuals, 18-55 years old with a first ever stroke registered in Riks-Stroke, the Swedish national quality register for stroke care. The questionnaire concerned aspects of current health condition, living and social arrangements, physical and cognitive functions, activities in daily life, relationships, social life, leisure pursuits, self-perception, participation, work and life satisfaction. Most of the questions aimed to investigate differences between the present time and before stroke onset. In-depth interviews with two men and three women aged 37-54, living at home after their stroke generated the hypotheses that younger persons with stroke are frustrated and feel invisible and outside. Rehabilitation for the young was perceived as in adequate due to the fact that the rehabilitation setting does not acknowledge the specific needs that younger persons with stroke have. Prior to the stroke 855 of 1068 (80%) of the participants, had been in paid employment. After the stroke, 65% of the men and 66 % of the women returned to work. Factors of importance for return to work were associated with the self-reported data: the feeling that it was important to work (OR 5.1), not perceiving oneself as a burden to others (OR 3.3), not having a deteriorated ability to run a shorter distance (OR 2.8) and having support for return to work (OR 3.7). Changes in self-reported physical and cognitive functions as compared with pre-stroke condition was explored in 867 (513 men and 354 women) P-ADL independent persons with stroke. Deteriorated physical abilities were reported in 56-79% and deteriorated cognitive abilities in 48- 68% of the participants. Women were significantly more affected in terms of both physical and cognitive deterioration than the men. Seventy-two percent of the participants did not know how much they could physically exert themselves after their stroke, women significantly more than men. In addition, significant associations were found between deteriorated physical function and deteriorated cognitive function as well as fear of physical exertion. The strongest association for deteriorated ability to move in crowded environments was the risk factors deteriorated cognitive ability (OR of 5.4) and being afraid of physical exertion (OR of 3.1). Life Satisfaction and factors associated with not being satisfied with life as a whole in 1068 (631 men and 437 women) persons with stroke was assessed with the LiSat 9, baseline data from Riks- Stroke and self-reported answers from the questionnaire. Fifty-three percent of the participants were not satisfied with life as a whole. Men and women were analyzed separately in terms of associations with not being satisfied with life as a whole. Women who had a haemorrhage (OR 3.9) and a deteriorated ability to concentrate (OR 2.1) had a higher risk of not being satisfied. For men the risk was associated with living without a significant other (OR 3.2), not working (OR 2.3) and deteriorated ability to concentrate (OR 2.0). In conclusion, younger individuals who have experienced a stroke feel frustrated and invisible due to the fact that their needs are not acknowledged. Age and gender have an impact on outcome of present rehabilitation programs and the problems of younger persons with stroke can be detected at an earlier stage by developing appropriate instrument and delivering information directly aimed at physical functioning. Further studies on gender specific differences in stroke outcome concerning physical and cognitive functions as well as life situation after stroke are needed. In order to optimize rehabilitation in terms of return to work, external support and motivation seem to be important factors to consider. Key words: Adult, cognition disorders, gender differences, middle aged, motor activity, quality of life,questionnaires, stroke, wor