Abstract
INTRODUCTION: Early diagnosis of brain tumours is one of the top 10 clinical research priorities identified by the neuro-oncology community. Headache is the most common first symptom (23%), is present in 50% by the time of initial hospital attendance and presentations are often delayed. Patients with tumour associated headaches often have unrecognised, or subtle, visual or cognitive signs or changes in behaviour/mood - headache “plus”. These cases often have a delayed presentation to primary care, when compared with patients presenting with focal symptoms or signs (e.g. hemiparesis, dysphasia) or seizures. We have used prospective national and local audit findings and stakeholder consensus to produce a Lothian electronic Protocol Based Referral for expedited GP open access brain CT imaging or referral for fast Optometry assessment within 24–48 hours. METHODS: Data form over 340 brain tumour patients involved in a Scottish audit of first presenting symptom and symptoms and signs at hospital presentation and neuro-cognitive data from 100 patients admitted for surgery with a brain tumour, were evaluated, looking at diagnostic delays and subtle finding found in patients presenting with headache as an early symptom. The Edinburgh Protocol was developed in collaboration with Macmillan Lead Cancer GP, Lead GP for Protocol Based Referral (PBR), Secondary Care Neuroscience specialists and the Scottish Lead for Optometry. Using the established Lothian GP Open Access CT scan policy and the Lothian electronic referral system for referral for scanning supplemented by the RefHelp system for GPs a new expedited PBR for 24–48 hour imaging and optometry evaluation was agreed. RESULTS: The Edinburgh Protocol for “Headache Plus” suspicion of cancer incorporates Scottish Cancer Referral Guidelines for Headache Suspicious of Cancer and co-existence of subtle behavioural or cognitive symptoms; a past history of cancer; or possible visual signs for fast referral for detailed optometry within 24–48 hours for evaluation of visual fields and fundi. Evaluation of a simple fast screening test of cognition (semantic verbal fluency (animals) that can be done in the GP clinic in 2–3 minutes is also being trialled. These features have been integrated into the electronic GP Protocol Based Referral pathway for open access CT brain scan within 24–48 hours rather than the neurological referral for clinical evaluation, usually “2 week wait”. The PBR includes detailed advice in the GP RefHelp system supported by educational videos on headaches and papilloedema and how to perform the semantic verbal fluency test. CONCLUSION: The Edinburgh Protocol for “Headache Plus” suspicion of cancer PBR is currently being trialled in Lothian Region, Scotland. The detailed evaluation including; referral times, frequency of positive scans, before and after comparisons with referral times in Lothian and impact on existing open access CT scanning numbers and waiting times are being assessed as part of a Brain Tumour Charity Grant for “Diagnosing Brain Tumours Earlier” programme.