“No one thinks, it could be a brain tumour”- a qualitative study of people recently diagnosed with a glioma

Talk Code: 
Fiona Walter
Suzanne Scott, Clarissa Penfold, Sarah Curtis, Alexis Joannides
Author institutions: 
University of Cambridge, King's College London


The prognosis for primary brain tumours remains poor; only 40% of people diagnosed with malignant brain tumours live for more than a year. Timely diagnosis can improve patient outcomes yet both patients and GPs may 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 increased awareness and drive service change.


Qualitative in-depth interviews focussing on the experience and appraisal of symptoms and patients’ perspectives of the pathways to diagnosis were undertaken with 39 adult patients recently diagnosed with a primary glioma brain tumour and their family members, in the Eastern or North West regions of England. Interviews were analysed using the Framework approach and thematic analysis.


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. Half the participants (21/39) noticed a combination of physical and cognitive symptoms, including changes in cognition, sleep (daytime sleepiness, extended sleep) and personality, seizures, one-sided weakness, dizziness, headache and other head sensations, 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.


The findings from this study have implications for public awareness and GP education. We have 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 their outcomes.

Submitted by: 
Fiona Walter
Funding acknowledgement: 
The Brain Tumour Charity