Exploration of the outcomes and experiences of people living with cognitive impairment and intracerebral haemorrhage: a mixed methods approach

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