The impact of emotional and cognitive changes after stroke

The impact of emotional and

cognitive changes after stroke

a longitudinal community-based study

The research described in this thesis was financially supported by the Netherlands Organisation for Scientific Research (NWO) under project number 940-33-006 and by Stichting Neuropsychologie Noord Nederland.

© 2004, Annemarie Visser-Keizer ISBN 90-5335-042-X

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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.

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RIJKSUNIVERSITEIT GRONINGEN

The impact of emotional and cognitive changes after stroke

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 14.45 uur

door

Annemarie Cecile Visser-Keizer geboren op 6 juli 1975

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

Contents

Chapter 1 Health status of stroke group: comparison of comorbidity Chapter 2 Subjective changes in emotion and cognition after stroke:

perception of patients and partners

Chapter 3 Longitudinal analysis of patients’ awareness of emotional and cognitive changes after stroke

Chapter 4 Depressive and anxious mood after stroke

Chapter 5 Depressive mood and cognitive functioning after stroke

Chapter 6 Longitudinal analysis of fatigue after stroke

Chapter 7 Quality of life in partners of stroke patients

Chapter 8 Prediction of patients’ well-being fifteen months after stroke

Chapter 9 General discussion and conclusions

Summary Samenvatting Dankwoord Curriculum Vitae 7 15 31 55 83 107 129 151 173 199 217 223 231 235

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 Nether-lands, annually approximately 30.000 people are afflicted by a stroke. It is estimated that 120.000 to 140.000 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

8

to a hospital stroke unit within 3 hours. Recent Dutch population-based studies per-formed before the widespread availability of thrombolytic therapy showed that ap-proximately 55 to 60 percent of patients was hospitalised after stroke, with the propor-tion 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 emer-gency 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 physi-cal consequences of stroke, one becomes increasingly aware that a range of emo-tional 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 interac-tion between premorbid personality, damage to the brain and the emointerac-tional reacinterac-tion 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

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 rep-resent only a small and selected proportion of the total stroke group, which is biased to-wards 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 rela-tionships 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

10

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 dif-ferences 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 disagree-ment between patients and partners at three months post-stroke are now longitudi-nally 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 in-formation 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.

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.

12

Introduction

References

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