Exploration of the outcomes and experiences of people living with cognitive impairment and intracerebral haemorrhage: a mixed methods approach
McGoohan, Katie Louise
Introduction Stroke due to intracerebral haemorrhage (ICH) is the most devastating and least treatable type of stroke, where onset is sudden, often leaving the individual and family ill-prepared to deal with the long-term consequences. Associations between cognitive impairment and ischaemic stroke have been well described in the literature however fewer data are available for ICH and cognitive impairment. Although some studies have investigated the prevalence and risk factors of cognitive decline before and after ICH, very little is known about the influence of cognitive decline on functional outcome after ICH. Furthermore, there have been no qualitative studies designed specifically to examine the experiences of people living with cognitive impairment after intracerebral haemorrhage. Aims To explore the outcomes and experiences of people living with cognitive impairment and intracerebral haemorrhage: (a) To study the prevalence of pre-existing dementia and cognitive impairment in patients with ICH, and to quantify their incidence at specific time points thereafter, (b) To investigate the demographic, clinical, radiographic and functional outcomes associated with the occurrence of cognitive impairment following an ICH, and (c) Evaluate the experience of life after ICH with cognitive impairment. Methods (a) A retrospective analysis of all patients diagnosed with ICH in one region of Scotland between June 2010 and May 2013, who had available CT data from the time of the index ICH (n=404), was conducted. Data were taken from the Lothian Audit of the Treatment of Cerebral Haemorrhage, including people aged ≥ 16 years at the time of diagnosis. Data on demographics, medical history, and medication was drawn on. In addition to determining the prevalence and risk factors of pre-existing cognitive decline, survival analysis was used to determine cumulative rates of patients remaining free of cognitive decline up to 5 years after their ICH (LATCH COG). (b) A prospective observational cohort sub-study (LINCHPIN COG) of adults with ICH (n=45) was conducted using a detailed assessment of cognition and functional outcomes at 6 and 12-24 months after ICH. Pre-existing cognitive decline was measured using the IQCODE informant questionnaire, whilst also collecting basic demographic data, data on vascular risk factors, stroke severity, level of dependency, and neuroimaging features on computed tomography and magnetic resonance imaging. The primary outcome was new-onset cognitive impairment (defined as MoCA score <26) at 6 months, when functional outcomes (depression, fatigue, health-related quality of life) were also measured. (c) In an embedded qualitative study, six ICH survivors and four family members participated in semi-structured interviews and gave details about their experiences of life after ICH. The data collected was analysed using a thematic analysis approach. Results (a) Using data from LATCH COG, I found that roughly 1 in 4 (23%) patients had cognitive decline prior to their ICH. Forty-one patients (10%) had cognitive impairment with no dementia. Fifty-two patients met the criteria for pre-existing dementia (13%). In univariate analysis of LATCH COG, CT neuroimaging markers of cerebral amyloid angiopathy and small vessel disease were associated with pre-existing cognitive decline. In logistic regression analysis, patients who had a lobar ICH were twice as likely to exhibit preexisting cognitive decline and 3 times more likely to exhibit pre-existing dementia than those who had a non-lobar ICH. Patients with central (deep) atrophy were over 4 times more likely to exhibit cognitive decline and 8 times more likely to exhibit dementia before their stroke than those without. In line with this, severity of white matter changes was associated with pre-existing cognitive decline, suggesting a neurodegenerative process. Increasing age and larger haemorrhage volume were also associated with an increased likelihood of patients having cognitive decline prior to their stroke. During the first 5 years of follow-up of LATCH COG, of the 168 patients who survived longer than 30-days after their ICH, 47 patients developed new-onset cognitive decline (cognitive impairment and dementia). Cumulative survival rates for patients remaining free of cognitive decline were 82% in the first year and 65% at 5 years. In univariate analysis of LATCH COG, presence of posterior white matter lucencies was associated with new-onset dementia, indicating an association with markers of small vessel disease. In Cox regression analysis, patients who had a lobar ICH were twice as likely to exhibit new-onset cognitive decline than those who had a non-lobar ICH. In those who survived past 30 days, the incidence of new-onset cognitive decline was 37% in patients with lobar ICH and 20% in patients with non-lobar ICH. (b) Cognitive impairment is frequent after ICH with 43% of participants from LINCHPIN COG scoring <26 on the MOCA at 6 months. In univariate analysis of LINCHPIN COG, new-onset cognitive impairment at 6 months was associated with pre-ICH history of hypertension. I could not detect statistically significant associations between new-onset cognitive impairment and functional outcomes at 6 months. The small sample size may have been a significant contributory factor, making it difficult to identify any statistically significant differences between those with and without cognitive impairment (c) Thematic analysis of the qualitative interviews identified four overarching themes relating to how survivor’s and their family members experienced life after stroke: ‘the effects of stroke on sense of self and identity’, ‘adaptions and adjustment’, ‘uncertainty’, and ‘impact on family members’. These findings were interpreted in relation to theories of biographical disruption and suggest the necessity for individualised assessment of needs and the planning of services to best assist stroke survivors in coming to terms with their illness and its longterm consequences. Conclusion Pre-existing cognitive decline affects more than one-fifth of patients with ICH. For survivors of ICH without pre-existing cognitive decline, over two-fifths develop new-onset cognitive impairment by 6 months after ICH. Neuroimaging markers of cerebral amyloid angiopathy and small vessel disease were associated with pre-existing and new-onset cognitive decline. New-onset cognitive impairment at 6 months was associated with pre-ICH history of hypertension. This implies an important role of vascular processes on the pathophysiology of post-ICH cognitive decline. The qualitative accounts in this study indicate the devastating effect that a stroke due to haemorrhage can have on the lives of survivors and their families, with participants often indicating that they could no longer be the person that they were before the stroke. These data may help inform patients, their family and caregivers about the risk of cognitive impairment after ICH and its resultant impact on the lives of survivors.