“I knew things were changing and I couldn’t figure it out”: the BRAin tumour Early Detection (BRAcED) study – implications for public awareness and GP education


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Fiona Walter1,Clarissa Penfold1,Alexis Joannides1,William Sage1,Andrew Brodbelt2,Michael Jenkinson3,Stephen Price4,Colin Watts5,Joyce Bell6,Margaret Johnson6,Willie Hamilton7
1University of Cambridge,2Consultant neurosurgeon, The Walton Centre, Liverpool,3Clinical Senior Lecturer in Neurosurgery, University of Liverpool,4Cambridge Neuroscience, University of Cambridge,5Consultant Neurosurgeon, University of Cambridge,6PPI c/o University of Cambridge,7University of Exeter

Abstract

Background

The prognosis for primary brain tumours remains poor; only 40% of people diagnosed with malignant brain tumours live for more than a year. Both patients and GPs can find it difficult to recognise early symptoms. This study aimed to develop a richer understanding of patients’ experiences of symptom appraisal, help-seeking and routes to diagnosis to inform recommendations for information and education provision for the public and GPs.

Method

Qualitative in-depth interviews were undertaken with 39 adult patients recently diagnosed with a primary glioma brain tumour in the Eastern or North West regions of England. Interviews were analysed using the Framework approach and thematic analysis.

Results

21 men and 18 women aged 22-76 (median 56) years, with high and low grade gliomas (29 grade III-IV, 10 grade II), were interviewed within 4 weeks of diagnosis. Most were diagnosed following emergency presentation to healthcare (n=28), with 22 of these reporting prior primary care consultations and/or emergency presentations.

Half the participants (21/39) noticed a combination of physical and cognitive symptoms (including headaches, movement and/or sensation changes, drowsiness and/or sleep disruption, cognitive and personality changes, and focal seizures) more than 6 months before seeking help. Symptoms were ‘explained’ by other external or internal factors (such as familial stress, the aging process and other co-morbidities), or interpreted as innocuous, especially when subtle or intermittent. Participants were concerned about ‘wasting the doctor’s time’ and often described ‘feeling silly’ about their symptoms. The nature and evolution of symptoms also affected participants’ capacity to appraise symptoms and seek help.

Conclusion

This study has identified challenges for patients in appraising and seeking help for symptoms or changes associated with a subsequent diagnosis of primary brain tumour. Refined information for patients and guidance for clinicians could shorten time to diagnosis and potentially improve both patient experience and outcomes.