The self-reported needs of patients following subarachnoid hemorrhage (SAH)

Background: Despite advances in the acute care of subarachnoid haemorrhage, longer-term services remain under-developed. Clinical measures are commonly used to assess outcome and quality of life, but patient-reported needs and the extent to which they are met have not been measured. This information is essential to plan and develop evidence-based, patient-centred services. The aim of this study was to describe the frequency and type of self-reported met and unmet needs of subarachnoid haemorrhage survivors, explore whether these differ early and late in recovery and the factors associated with whether needs were met. Methods: A census cross-sectional postal survey of 400 subarachnoid haemorrhage survivors discharged from a large neurosurgical unit. The Self-Reported Needs after Stroke Questionnaire was modified and used to measure the self-reported needs of subarachnoid haemorrhage survivors and the extent to which they were met 1-2 years and 3-5 years post haemorrhage. Results: 203 (51%) participants responded: 122/260 (47%) from the early and 81/143 (57%) from the late cohort. 63% were female; mean age was 55 years. 86% of survivors reported one or more need, and 78% reported at least one unmet need (median 6, range 1-19). The most commonly reported need related to fatigue (66%). This and several other health needs were reported as unmet in over 80% of identified cases. We found no consistent factors that were associated with needs remaining unmet. Conclusion: Most subarachnoid haemorrhage survivors in both cohorts had unmet needs. Future research should aim to inform the development of post-discharge services to address the persistent long-term needs identified. IMPLICATIONS FOR REHABILITATION Subarachnoid haemorrhage survivors report a number of needs 1-2 years and 3-5 years post haemorrhage. Needs relating to fatigue, memory, concentration, headache and anxiety were the most commonly reported. A large proportion of needs were described as unmet. The design of rehabilitation services for subarachnoid haemorrhage survivors should consider the self-reported needs described in this study.