As part of a 'clinical governance' initiative, a patient/carer led study was designed to determine the psychosocial outcome of a consecutive cohort of 137 aneurysmal sub-arachnoid haemorrhage (ASAH) patients of whom 45% had experienced a severe haemorrhage. Most patients were middle class (51%), female (63%), aged under 54 years (53%) and 30% had school-age children. Information booklets did not meet the need for case-specific answers and communication problems were identified despite the high rating of in-patient treatment. Substantial problems occurred after discharge because of a hiatus in care and support by community-based services. Carers carried major psychosocial burdens, fifty-one per cent reporting that their work was negatively affected, and after a year, employment cost to carers was pounds sterling 182,000 and pounds sterling 590,000 for patients. 11% of patients lost their jobs as a direct consequence of the ASAH. A cost-feasible solution to improve the communication-support problems was identified by these 'consumers'.

Background: After aneurysmal subarachnoid hemorrhage (SAH), thrombus forms over the cerebral cortex and releases hemoglobin. When extracellular, hemoglobin is toxic to neurones. High local hemoglobin concentration overwhelms the clearance capacity of macrophages expressing the hemoglobin-haptoglobin scavenger receptor CD163. We hypothesized that iron is deposited in the cortex after SAH and would associate with outcome. Methods: Two complementary cross-sectional studies were conducted. Postmortem brain tissue from 39 SAH (mean postictal interval of 9 days) and 22 control cases was studied with Perls’ staining for iron and immunolabeling for CD163, ADAM17 (a disintegrin and metallopeptidase domain 17), CD68, and Iba1 (ionized calcium binding adaptor molecule 1). In parallel, to study the persistence of cortical iron and its relationship to clinical outcome, we conducted a susceptibility-weighted imaging study of 21 SAH patients 6 months postictus and 10 control individuals. Results: In brain tissue from patients dying soon after SAH, the distribution of iron deposition followed a gradient that diminished with distance from the brain surface. Iron was located intracellularly (mainly in macrophages, and occasionally in microglia, neurones, and glial cells) and extracellularly. Microglial activation and motility markers were increased after SAH, with a similar inward diminishing gradient. In controls, there was a positive correlation between CD163 and iron, which was lost after SAH. In SAH survivors, iron-sensitive imaging 6 months post-SAH confirmed persistence of cortical iron, related to the size and location of the blood clot immediately after SAH, and associated with cognitive outcome. Conclusions: After SAH, iron deposits in the cortical gray matter in a pattern that reflects proximity to the brain surface and thrombus and is related to cognitive outcome. These observations support therapeutic manoeuvres which prevent the permeation of hemoglobin into the cortex after SAH.

Functional outcome after subarachnoid haemorrhage has traditionally been assessed using scales developed for other neurological conditions. The modified Rankin score and Glasgow Outcome Scale are most commonly used. Employment of these scales in subarachnoid haemorrhage is hampered by well recognized limitations. We set out to develop and validate a new condition-specific subarachnoid haemorrhage outcome tool (SAHOT). Items addressing diverse aspects of the impact of subarachnoid haemorrhage were collected during focus groups involving patients, next-of-kin and multidisciplinary professionals involved in subarachnoid haemorrhage management. After a series of iterative revisions, the resultant questionnaire was applied to patients and their next-of-kin at 1, 3 and 6 months post-subarachnoid haemorrhage. Rasch methodology was used to finalize the structure of the questionnaire and explore the extent to which SAHOT scores met Rasch-based criteria of successful measurement. The SAHOT was further assessed using traditional scale evaluation techniques, and validated in a second separate subarachnoid haemorrhage patient cohort. The final SAHOT included 56 items dealing with cognitive, physical, and behavioural/psychological consequences of subarachnoid haemorrhage. Rasch analysis indicated the scale successfully measured functional outcome post-subarachnoid haemorrhage. Three item scoring categories produced the best scale performance. There was no evidence of differential item functioning between patients and next-of-kin. The SAHOT was found to be acceptable, have good convergent and divergent validity, good discrimination and excellent responsiveness. It was successfully validated in a second subarachnoid haemorrhage patient cohort. The SAHOT offers the first subarachnoid haemorrhage-specific scientifically robust outcome measure with potential utility in neurovascular clinical services and research studies.

An 18-month retrospective study of 'treatment-as-usual' of aneurysmal subarachnoid haemorrhage (ASAH, n = 142) used as control to compare prospective study (n = 184) of an 'enhanced' ('Specialist Liaison Nurse'-SLN) service to reduce psychosocial trauma. Consultant notes, Glasgow Coma Scores and 'High Risk' bleeds scores provided clinical data. A standardized patient/carer designed questionnaire provided psychosocial data, plus a cost-analysis. The cohorts were good clinical and social matches. Sixty-five per cent of patients had 'high risk' bleeds, and 81% were Grade 1 and 2 on the GCS, 54% aged less than 55 years, 83% belonged to social classes 1-3 and 32% had school-aged children. Satisfaction with SLN inpatient and discharge care increased significantly, with reduced psychosocial trauma. The SLN produced net 'savings' of pounds sterling 155,000 p.a., from reduced time-off work, medical time and re-admissions. Prospectively, pounds sterling 1.6 + million annual 'savings' were identified on 80% of employed patients returning to work. Long-term dysfunctional stress is not inevitable for most ASAH patients as a SLN is clinically and fiscally cost-effective.

This PROM approach allows the 'patient's voice' to be heard, which facilitates speedier patient and family recovery, showing that an integrated treatment approach in 'high tech' neuro-surgery is cost-effective.