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 rehabilitationSubarachnoid 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.