Contributors WJB and DHM were involved in the conception and design of the study. JKS recruited and obtained consent from participants and conducted the MRI analysis. DRA conducted the statistical analysis. All authors contributed to preparation of the manuscript. Competing interests OC receives grant support from the Multiple Sclerosis Society of Great Britain and Northern Ireland, UCLH-UCL Biomedical Research Centre and honoraria from Novartis, Bayer Schering and GE. She is a member of the editorial board of Neurology. DHM has received honoraria through payments to his employer, UCL Institute of Neurology, for Advisory Committee and/or Consultancy advice in multiple sclerosis studies from Biogen Idec, GlaxoSmithKline, Novartis, Merck, Chugai, Mitsubishi Pharma Europe and Bayer Schering Pharma. He has also received compensation through payments to my employer for performing central MRI analysis of multiple sclerosis trials from GlaxoSmithKline, Biogen Idec, Novartis and Merck. Ethics approval Ethics committees at Queen Square and Moorfields Eye Hospital. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement Clinical and MRI data are available for collaborative studies and can be requested by non-profit researchers.
ObjectivesTo present the results of a survey of patients with spontaneous intracranial hypotension (SIH) secondary to spinal cerebrospinal fluid (CSF) leak, documenting the patient experience of its diagnosis and management as well as quantifying its impact on quality of life.DesignA cross-sectional anonymous online survey was designed in conjunction with the CSF Leak Association patient charity. The survey included questions on diagnosis, investigations and treatments received, as well as validated disability and quality of life questionnaires.ParticipantsSixty-four patients with a confirmed diagnosis of SIH who were receiving treatment within the UK were included in the analysis. The mean age was 42.8 years, 94% were female and 43 had ongoing symptoms of SIH.ResultsPatients who presented to their general practitioner with symptoms of SIH were seen an average three times before being referred to a specialist, and in just under half of patients, the diagnosis was not made by the first specialist they saw. There was variability in which investigations were performed and how urgently they were organised. The mean EuroQol (EQ-5D-5L) Visual Analogue Scale score was 36.4/100 and median Headache Impact Test-6 score was 68/78 (very severe impact). More than half of the respondents reported that they had to amend work duties due to SIH, more than a quarter reported that they had lost their job and two-thirds reported that their condition had affected their financial health. Only 23.4% of patients felt that they had received enough help and advice to manage their pain due to SIH.ConclusionsSIH is a highly disabling disorder, affecting multiple domains, including pain, mobility, activities of daily living, financial circumstances and employment. Diagnostic delay and misdiagnosis are common, and currently there is a lack of consistency in the investigation and management of SIH in the UK.
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