Publication of the results of our patient survey

We're pleased to announce the publication of the results of our patient survey in BMJ Open, a peer reviewed open access medical journal.

The paper entitled ‘Patient experience of diagnosis and management of spontaneous intracranial hypotension: a cross-sectional online survey’ presents our findings from the survey which was online during March 2021. We ran the survey so we could document the patient experience of diagnosis and management of spontaneous intracranial hypotension (SIH) secondary to spinal cerebrospinal fluid (CSF) leak. Crucially we included the impact this condition has on quality of life using validated disability and quality of life questionnaires.

This paper forms part of our ongoing work with the SIH special interest group to develop and publish a national consensus guideline for the clinical management of SIH in spinal leaks. We wish to thank all members of the SIH and charity volunteers who contributed their time in the development and testing of questionnaire.

For their impressive effort in carrying out the work and writing the paper, special thanks go to the authors Dr Sanjay Cheema (Clinical Research Fellow, UCL), Dr Manjit Matharu (Associate Professor, UCL and Honorary Consultant, NHNN), Clare Joy (Chair, CSFLA), Jenny people (Volunteer, CSFLA), Jessica Snape-Burns (Volunteer, CSFLA) and Tamsin Trevarthen (Trustee, CSFLA).