Evidence map›Paper›PMID 42062596›Full record

ArticleJournal of neurology2026

"Getting to diagnosis was an absolute nightmare": survey insights about the lived experience of spinal CSF leak in Australia and Aotearoa New Zealand.

Lachlan S W Knight, Rachel L Smith, Alexis Ceecee Britten-Jones, Sam E John, David B Grayden, Bang V Bui, Lauren N Ayton, Bao N Nguyen

Abstract read
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In one paragraph

Article in Journal of neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Lachlan S W KnightDepartment of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.ORCID http://orcid.org/0000-0002-7633-5486
Rachel L SmithDepartment of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.ORCID http://orcid.org/0009-0001-4426-1259
Alexis Ceecee Britten-JonesDepartment of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.ORCID http://orcid.org/0000-0002-1101-2870
Sam E JohnDepartment of Biomedical Engineering, Graeme Clark Institute for Biomedical Engineering, The University of Melbourne, Parkville, Victoria, Australia.ORCID http://orcid.org/0000-0003-3780-2210
David B GraydenDepartment of Biomedical Engineering, Graeme Clark Institute for Biomedical Engineering, The University of Melbourne, Parkville, Victoria, Australia.ORCID http://orcid.org/0000-0002-5497-7234
Bang V BuiDepartment of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.ORCID http://orcid.org/0000-0001-7298-1352
Lauren N AytonDepartment of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.ORCID http://orcid.org/0000-0001-9907-084X
Bao N NguyenDepartment of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia. bnguyen@unimelb.edu.au.ORCID http://orcid.org/0000-0002-3097-619X

Funding

National Health and Medical Research Council Investigator GrantUniversity of Melbourne Faculty of Medicine DentistryUniversity of Melbourne Health Sciences Early-Mid Career Researcher Project Catalyst GrantUniversity of Melbourne Health Sciences Momentum FellowshipUniversity of Melbourne Melbourne Postdoctoral Fellowship
6 · The paper itself

Abstract

backgroundSpinal cerebrospinal fluid (CSF) leak is a disabling and often misdiagnosed condition characterised by CSF hypovolemia. Associated neurological symptoms are diverse and often leave individuals bed-bound due to their orthostatic nature. Prior literature describing the difficulties in diagnosis, treatment, and ongoing impact of CSF leak is, thus far, confined to Europe and North America. This study provides a novel account of lived experiences of spinal CSF leak in Australia and Aotearoa New Zealand (NZ).

methodsAn online survey exploring symptoms, diagnosis, treatment, and effect on daily life of a person's "first" CSF leak was designed with consumer involvement. Responses were received from May to August 2025. Open-text responses were analysed using thematic analysis.

resultsIn total, 106 surveys were completed. Over 70 symptoms were reported; the most common were orthostatic headache (95.3%), neck pain (85.8%), and brain fog (79.2%). Most people considered their diagnosis (73.6%) and treatment (65.3%) difficult, underscored by limited clinician awareness and access to care, leaving individuals to self-advocate. Amongst symptomatic participants (73.6%), median EuroQol Visual Analogue Scale score was 40 (interquartile range 25-64; indicating low health-related quality-of-life) and mean Headache Impact Test-6 score was 69 ± 5 (indicating severe impact). Other challenges identified included navigating change to social identity and daily functioning.

conclusionsThe spinal CSF leak experience in Australia and NZ is comparable to reports from other high-income countries, highlighting the global need to increase awareness of spinal CSF leak, support timely diagnostic, referral and treatment pathways, and mitigate its impact on quality of life.

Indexed as

Cerebrospinal Fluid LeakAdultAgedAustraliaFemaleHumansMaleMiddle AgedNew ZealandQuality of LifeSurveys and QuestionnairesYoung AdultCerebrospinal fluid leakIntracranial hypotensionOrthostatic headacheQuality of lifeSpinal CSF leak

Identifiers

PMID42062596
PMCPMC13132889

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.