The impact of emotional and cognitive changes after stroke

Transcription

1 The impact of emotional and cognitive changes after stroke a longitudinal community-based study Annemarie C. Visser-Keizer

2 The research described in this thesis was financially supported by the Netherlands Organisation for Scientific Research (NWO) under project number and by Stichting Neuropsychologie Noord Nederland. 2004, Annemarie Visser-Keizer ISBN X Cover & lay out: Yabber, Utrecht Illustration: gettyimages Printed by Ridderprint Offset Drukkerij B.V., Ridderkerk Financial support by the Netherlands Heart Foundation and the Behavioral School of Cognitive Neurosciences (BCN) for the publication of this thesis is gratefully acknowledged. All rights reserved. No part of this publication may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without prior written permission of the author.

3 RIJKSUNIVERSITEIT GRONINGEN The impact of emotional and cognitive changes after stroke a longitudinal community-based study Proefschrift ter verkrijging van het doctoraat in de Medische Wetenschappen aan de Rijksuniversiteit Groningen op gezag van de Rector Magnificus, Dr. F. Zwarts, in het openbaar te verdedigen op woensdag 22 december 2004 om uur door Annemarie Cecile Visser-Keizer geboren op 6 juli 1975 te Delfzijl

4 Promotores: Prof. dr. M. Meyboom-de Jong Prof. dr. B.G. Deelman Copromotor: Dr. I.J. Berg Beoordelingscommissie: Prof. dr. J.M. Bouma Prof. dr. J.F.M. Metsemakers Prof. dr. R. Sanderman

5 Contents Introduction 7 Chapter 1 Health status of stroke group: comparison of comorbidity 15 Chapter 2 Chapter 3 Chapter 4 Subjective changes in emotion and cognition after stroke: perception of patients and partners Longitudinal analysis of patients awareness of emotional and cognitive changes after stroke Depressive and anxious mood after stroke Chapter 5 Depressive mood and cognitive functioning after stroke 107 Chapter 6 Longitudinal analysis of fatigue after stroke 129 Chapter 7 Quality of life in partners of stroke patients 151 Chapter 8 Prediction of patients well-being fifteen months after stroke 173 Chapter 9 General discussion and conclusions 199 Summary 217 Samenvatting 223 Dankwoord 231 Curriculum Vitae 235

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7 Introduction Stroke epidemiology Stroke is a clinical diagnosis defined as a focal neurological impairment of sudden onset and lasting more than 24 hours (or leading to death) and of presumed vascular origin (Hatano, 1976). Most strokes are ischemic in nature and according to population-based studies constitute 67 to 80 percent of all strokes (Feigin et al., 2003). In the Netherlands, annually approximately people are afflicted by a stroke. It is estimated that to people in the Netherlands have suffered one or more strokes (Van Oers, 2002). The incidence rate of stroke increases with age, with rates between 1.7 in 1000 for men aged 55 to 59 years and 69.8 in 1000 for men aged 95 years and over. Corresponding figures for women in a recent Dutch population-based study were 1.2 and 33.1 in 1000 respectively. Although the incidence rate of stroke is higher in men than women, the lifetime risk was found to be similar for both sexes (Hollander et al., 2003). Due to ageing of the population, it is estimated that the incidence of stroke will increase with 30% in 2015 (RIVM, 1997). Mortality rates after stroke have dropped in recent decades, but appear to have levelled off in the Netherlands since the end of the 1980 s (Reitsma et al., 1998). Twenty to 30 percent mortality rates are found within the first months after stroke, of which 12 to 16 percent involve ischemic strokes (Feigin et al., 2003, Hollander et al., 2003). In 1999, stroke was the third leading cause of death in the Netherlands and was responsible for 2.9% of the total health care costs (CBS, 2001). Stroke care Since the introduction of thrombolytic therapy in the Netherlands, the treatment of acute stroke is slowly changing from wait and see to crisis management with referral 7

8 Introduction to a hospital stroke unit within 3 hours. Recent Dutch population-based studies performed before the widespread availability of thrombolytic therapy showed that approximately 55 to 60 percent of patients was hospitalised after stroke, with the proportion decreasing with age (Looman et al., 1996, Bots et al., 1996, Hollander et al., 2003). Stroke patients admitted to a hospital might constitute a special group of patients. First of all, they survived the time until hospitalisation and must have been referred to a hospital by their General Practitioner. If stroke patients directly check into the emergency department of a hospital without prior consultation of a physician, they must have been able to identify the signs of a stroke. A recent study showed that delayed hospital admission was related to the inability of patients to recognise the symptoms of stroke (Meijer et al., 2004). In 2001, the mean duration of hospitalisation after stroke in the Netherlands was 21 days, although regional differences were present (Kloek & Bots, 2003, Huijsman et al., 2001). After hospitalisation, of all stroke survivors, 40 to 60 percent is discharged home, 20 to 30 percent is transferred to a nursing home and only 10 to 15 percent is transferred to a rehabilitation centre (van Exel et al., 2003, Faber et al., 2002). Combining the percentages of patients who are not admitted to a hospital with those who are directly sent home after hospital admission shows that roughly three quarters of all patients will be at home several weeks after stroke. These groups of non-fatal non-hospitalised strokes and non-fatal hospitalised strokes without further institutional care will generally incorporate the physically less severe strokes. Emotion and cognition following stroke When patients continue their daily life after stroke, they may experience a variety of dysfunctions. Although in past research most attention has been directed at the physical consequences of stroke, one becomes increasingly aware that a range of emotional and cognitive changes can occur in the acute and chronic phases after stroke (Bogousslavsky, 2003, Hochstenbach, 1999, Ghika-Smid et al., 1999, Stolker, 1999). It is assumed that the emotional consequences of stroke are the result of a complex interaction between premorbid personality, damage to the brain and the emotional reaction of the patient to the consequences of stroke (Visser, 2002). In recent studies, the impact of the emotional and cognitive sequelae on the long-term adaptation to stroke has been stressed (Pohjasvaara et al., 2002, Gauggel, Peleska & Bode, 2000, Tatemichi et al., 1994). Furthermore, emotional disturbances and cognitive disabilities after stroke have 8

9 been described as causing most strain on the patient s social system (van den Heuvel et al., 2001, Anderson, Linto & Stewart-Wynne, 1995). So far, most studies on the consequences after stroke have been conducted in samples derived from hospitals and rehabilitation centres. As outlined above, these cohorts represent only a small and selected proportion of the total stroke group, which is biased towards the physically more disabled patients. Although some data have been gathered on cognitive disabilities and depression in community-dwelling stroke patients, little is known about the impact of changes in emotion and cognition on stroke patients living in the community. Aim and outline of this thesis The aim of this thesis is to discuss the impact of emotional and cognitive changes after stroke on the lives of stroke patients and their partners. The emotional and cognitive consequences of stroke are investigated at three and fifteen months post-stroke in a community-based sample of first-ever, ischemic stroke patients. The extent and course of the emotional and cognitive sequelae of stroke are surveyed. In addition, the relationships between the emotional and cognitive consequences of stroke and several aspects relevant to the quality of life and well-being of stroke patients and partners are investigated. Most patients in the present study were enrolled into the study by General Practitioners (GPs) from the northern part of the Netherlands. As samples derived from institutions may be biased towards the more disabled patients, it may well be that the group of patients included by their GP in the present study is biased towards the least disabled patients. This question of representativeness of the health status of the study sample is addressed in chapter 1. In this chapter the stroke-related comorbidity of the study sample is compared to comorbidity of a large stroke sample derived from the Morbidity Registration Network Groningen (RNG). In chapter 2, the changes in emotion and cognition as experienced by patients and partners at three months after the stroke event are described. When these changes are investigated, one can only rely on reports of the patient and on accounts of those 9

10 Introduction who knew the patient before and observed the patient after the stroke. This poses the question whether patients and partners can accurately report on the changes that have occurred. This issue is investigated with an emphasis on the factors that influence differences between the accounts of patients and partners. In addition, chapter 3 describes the course of the patient s awareness of changes in emotion and cognition after stroke. The factors that appeared to influence disagreement between patients and partners at three months post-stroke are now longitudinally related to the awareness of the patient. These factors include the level of unilateral neglect and the amount of distress of the patient and partner. In chapter 4, the course of anxious and depressive mood after stroke is analysed. A comparison is made with mood of elderly controls. An attempt is made to distinguish mood affected by stroke from mood affected by other factors that play a role in the lives of elderly patients. Furthermore, the influence of neurological variables, demographic factors, disabilities and life events on mood at fifteen months post-stroke is examined. In chapter 5, the relationship between depressive mood and cognitive disturbances after stroke is investigated. Patients with and without depressive mood, as assessed with a self-rated and observer-rated scale, are compared across time on speed of information processing, memory functioning, reasoning abilities and subjectively rated cognitive change. Chapter 6 focuses on an important, but neglected issue after stroke. In this chapter, the course of fatigue after stroke is investigated. The longitudinal influence of comorbid disorders, mood and post-stroke disabilities on fatigue is analysed, with an emphasis on the relationship with attentional disorders. Chapter 7 addresses the impact of disabilities and changes in emotion and cognition in the patient on the well-being of the partner. Well-being of the partner is analysed within the framework of the Social Production Functions (SPF) theory. In chapter 8, this same theory is used to discuss the impact of cognitive disabilities and activity restriction on the subjective well-being of stroke patients at fifteen months post-stroke. 10

11 Finally, the last chapter summarises the main findings and discusses the limitations of the present study and the implications for future research and clinical practice. 11

12 Introduction References Anderson, C.S., Linto, J., & Stewart-Wynne, E.G. (1995). A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke, 26, Bogousslavsky, J. (2003). William Feinberg lecture 2002: emotions, mood, and behavior after stroke. Stroke, 34 (4), Bots, M.L., Looman, S.J., Koudstaal, P.J., Hofman, A., Hoes, A.W., & Grobbee, D.E. (1996). Prevalence of stroke in the general population, the Rotterdam study. Stroke, 27 (9), Centraal Bureau voor de Statistiek (2001). Doodsoorzaken. Voorburg Heerlen: Centraal Bureau voor de Statistiek. Faber, R., Heijnen, L., & Koppe, P. (2002). Revalidatie na een beroerte. Vereniging van Revalidatie Instellingen in Nederland. Feigin, V.L., Lawes, C.M.M., Bennett, D.A., & Anderson, C.S. (2003). Stroke epidemiology: a review of population-based studies of incidence, prevalence, and case-fatality in the late 20th century. Lancet Neurology, 2, Gauggel, S., Peleska, B., & Bode, R.K. (2000). Relationship between cognitive impairments and rated activity restrictions in stroke patients. Journal of Head Trauma Rehabilitation, 15 (1), Ghika-Smid, F., van Melle, G., Guex, P., & Bogousslavsky, J. (1999). Subjective experience and behaviour in acute stroke: the Lausanne Emotion in Acute Stroke Study. Neurology, 1 (52), Hatano, S. (1976). Experience from a multicenter stroke register: a preliminary report. Bulletin WHO, 54, Hochstenbach, J. B. H. (1999). The cognitive, emotional and behavioural consequences of stroke. Katholieke Universiteit Nijmegen. Hollander, M., Koudstaal, P.J., Bots, M.L., Grobbee, D.E., Hofman, A., & Breteler, M.M.B. (2003). Incidence, risk, and case fatality of first ever stroke in the elderly population. The Rotterdam Study. Journal of Neurology, Neurosurgery and Psychiatry, 74, Huijsman, R. et al. (2001). Beroerte, beroering en borging in de keten. ZonMW. Kloek, H.L., & Bots, M.L. (2003). Beroerte: cijfers en feiten. Nederlandse Hartstichting. 12

13 Looman, S.J., Bots, M.L., Hofman, A., Koudstaal, P.J., & Grobbee, D.E. (1996). Stroke in the elderly: prevalence and frequency of hospitalization; the ERGO study (Erasmus Rotterdam Health and the Elderly). The ERGO research group. Nederlands Tijschrift voor Geneeskunde, 140 (6), Meijer, R.J., Hilkemeijer, J.H., Koudstaal, P.J., & Dippel, D.W. (2004). Modifiable determinants of delayed hospital admission following a cerebrovascular accident. Nederlands Tijdschrift voor Geneeskunde, 31 (148), Pohjasvaara, T., Vataja, R., Leppavuori, A., Kate, M., & Erkinjuntti, T. (2002). Cognitive functions and depression as predictors of poor outcome fifteen months after stroke. Cerebrovascular Disease, 14 (3-4), RIVM. (1997). Public health status and forecasts Utrecht: National Institute of Public Health and the Environment (RIVM). Reitsma, J.B., Limburg, M., Kleijen, J., Bonsel, G.J., & Tijssen, J.G. P. (1998). Epidemiology of stroke in the Netherlands from 1974 to 1994: the end of the decline in stroke mortality. Neuroepidemiology, 17, Stolker, D.H.C.M. (1999). Neuropsychologische zorgen na een beroerte, aanbevelingen voor ongekende problemen. Den Haag: Nederlandse Hartstichting. Tatemichi, T.K., Desmond, D.W., Stern, Y., Paik, M., Sano, M., & Bagiella, E. (1994). Cognitive impairment after stroke: frequency, patterns, and relationship to functional abilities. Journal of Neurology, Neurosurgery and Psychiatry, 57 (2), van den Heuvel, E.T.P., de Witte, L.P., Schure, L.M., Sanderman, R., & Meyboom- de Jong, B. (2001). Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention. Clinical Rehabilitation, 15, van Exel, J., Koopmanschap, M.A., Van Wijngaarden, J.D.H., & Scholte op Reimer, W.J.M. (2003). Costs of stroke and stroke services: Determinants of patient costs and a comparison of costs of regular care and care organised in stroke services. Cost effectiveness and resource allocation, 1 (2). van Oers, J.A.M. (2002). Gezondheid op koers? Volksgezondheid Toekomstverkenning RIVM, Visser, A.C. (2002). Emotional consequences and behavioural changes. In M.T.Vink, R.P. Falck & B.G. Deelman (Eds.) Seniors and stroke, changes in cognition, emotions and behaviour. Psychologie en ouderen, 6. Houten: Bohn Stafleu van Loghum. 13

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