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Organisation of services and clinical practice in acute cerebral venous sinus thrombosis: a UK survey
  1. Timothy Lavin1,
  2. Mark Holland2,
  3. Martin Punter1,3
  1. 1 Department of Neurology, Salford Royal NHS Foundation Trust, Salford, Greater Manchester, UK
  2. 2 Acute Medicine, Salford Royal NHS Foundation Trust, Salford, Greater Manchester, UK
  3. 3 University of Manchester Institute of Brain Behaviour and Mental Health, Manchester, Greater Manchester, UK
  1. Correspondence to Dr Martin Punter, Department of Neurology, Salford Royal NHS Foundation Trust, Stott Lane, Salford, Greater Manchester, UK; martin.punter{at}

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Introduction and aims

Cerebral venous sinus thrombosis (CVST) is rare and can present in a variety of ways to a variety of services. Guidelines are, for the most part, by consensus without strong randomised controlled evidence. We hypothesised that there may be variations in practice for the care of patients with CVST at both a physician and organisation level across the UK.


We distributed a 21-question online survey ( for 2 months in autumn 2015 to members of the Association of British Neurologists, British Association of Stroke Physicians, the Society of Acute Medicine and the Stroke Sentinel National Audit Programme. We also asked the clinical directors at each neurosciences centre to send the survey link to medical staff members.


There were 194 respondents from a wide geographic spread across the UK. Neurologists (45.8%) and stroke physicians (34.7%) constituted the majority of respondents.

Organisation of services

52.8% of respondents estimated that their units assessed fewer than five cases of CVST per year. The majority were cared for on a stroke (38.4%) or specialist neuroscience unit (41.8%), though 15.4% reported that patients were cared for on non-specialist general medical wards. 4.1% were not sure of the standard care setting. A majority of patients would have a neurologist (37.9%) or stroke physician (36.7%) as the named consultant, but only 55.2% reported patients would see either within 24 hours of diagnosis.

Physician expertise and confidence

Physicians estimated managing a median of 1–2 patients with CVST per year. Only neurologists (8.0%) and stroke physicians (5.1%) reported seeing over five patients each year. A majority of neurologists (72.0%) reported feeling very comfortable managing CVST (figure 1A). Of responding stroke physicians, 34.4% felt very comfortable and 51.7% felt comfortable but would seek further specialist advice. Of acute and elderly care physicians, 46.4% did not feel comfortable managing CVST.

Figure 1

(A) How comfortable do you feel managing case of cerebral venous sinus thrombosis (CVST)? (B) Duration of anticoagulation in CVST.

Acute clinical management

The initial treatment of choice of 85.2% respondents was low molecular weight heparin (LMWH) with 9.7% opting for unfractionated heparin (UFH). 7.3% respondents were uncertain. We used four case vignettes to illustrate management decisions. Respondents were confident in the use of heparin in CVST with no parenchymal changes (89.5%), CVST with venous infarct (83.9%) and CVST with venous infarct and small haemorrhages (71.4%). For CVST with a large haemorrhagic infarction, there was a higher level of uncertainty with only 29.8% confident in using heparin. 9.2% of respondents would avoid acute anticoagulation in patients with large haemorrhagic infarction.

More neurologists compared with other groups would confidently use heparin in the presence of large haemorrhage (34.7% vs 24.4%, p<0.01) and small haemorrhage (75.0% vs 64.0%, p<0.0001). We then excluded the 27 general physicians and compared the practice of neurologists and stroke physicians. Heparin would be used confidently in large haemorrhage by neurologists and stroke physicians in 34.7% versus 30.5% (p=0.479) and small haemorrhage in 80.0% versus 74.6% (p=0.262), respectively.

Longer-term anticoagulation

Oral vitamin K antagonist was the preferred choice for prolonged anticoagulation for 85% of respondents with 5% considering novel oral anticoagulant and 4% using LMWH (figure 1B). Most respondents treat unprovoked and provoked CVST for 3–6 months (69.6% and 84.2%, respectively) and CVST associated with a prothrombotic tendency, lifelong (80.5%).


The aim of this survey was to understand current practice in the care of patients with CVST in the UK. Early specialist input on designated stroke units has been shown to improve outcomes for arterial stroke patients.1 Although CVST may present with stroke, there are other presenting syndromes for which no guidance on service design exists. From our survey, although most CVST is managed in neurology or stroke units in the UK, non-specialists on non-specialist wards manage a significant minority, up to 20% of respondents. In addition, only just over half of survey respondents report that patients reliably saw a neurologist or stroke physician within 24 hours of diagnosis.

Our survey found a difference in confidence between neurologists and non-neurologists but no difference between neurologists and stroke physicians, most likely reflecting the presentation of CVST to stroke units in significant numbers. Given our observation that there are differences in clinical management and confidence to treat patients between specialities, the timeliness of specialist input may influence patient care and therefore service design. In Greater Manchester, we have tried to improve access for such patients to specialist care.2

For individual physician management, our survey found that most would treat CVST with LMWH, in line with European Federation of the Neurological Societies (EFNS) guidelines3 and in contrast to a previous international survey of neurologists4 where there remained a preference for UFH. Reasons for this difference may reflect a change in practice since the publication of EFNS guidelines or that the current survey sampled from a single nation where practice may be more homogeneous. International guidelines3 5 and previous systematic reviews6 support the use of heparin in CVST even with a large haemorrhage, but respondents in the current survey have concerns about its use in this setting possibly due to concerns about exacerbating haemorrhage or the potential need for surgical intervention.

It may be expected that specialists feel more comfortable managing uncommon diseases; however, the role of generalists remains important. There is variability in access to appropriate specialist acute care in the UK7 despite organised multiprofessional acute medical care improving patient outcomes8 and it is incumbent on specialists to work with generalists to raise awareness of CVST, as well as providing guidance for the immediate care of patients with CVST and pathways to access specialist care.


Our survey suggests that there remains uncertainty in the acute and long-term management of patients with CVST, reflecting the evidence base. There is a need for improved access to rapid specialist assessment and care settings for this group of patients which may include access to neurology or stroke units in the acute phase, and a longer-term strategy for reducing variation in the care of patients with CVST in the UK.


The authors acknowledge Richard Davenport (Edinburgh), Chris Douglass, Charles Sherrington and other colleagues in Salford Royal Hospital for feedback regarding the questionnaire in development. The authors are grateful to Association of British Neurologists (ABN), British Association of Stroke Physicians (BASP), the Society of Acute Medicine (SAM) and the Stroke Sentinel National Audit Programme (SSNAP) for assistance with publicising the survey.


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  • Contributors MP and TL designed the survey, interpreted results and wrote initial drafts. MH helped with interpretation and further revisions.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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