Experts at the University of Cambridge have called for more research that might improve the early detection of brain tumours, following a qualitative study that suggests there are subtle changes in the patient’s functioning and wellbeing that might act as tell-tale signs of the onset of disease.
The researchers caution that this research will also need to examine whether early diagnosis enables more treatment options to be offered and leads to improvements in a patient’s prognosis.
In a study published today in the British Journal of General Practice, researchers at the University of Cambridge found that some patients with brain tumours experience these subtle changes and may see their GP multiple times prior to diagnosis, suggesting that there are missed opportunities to catch the disease earlier.
Brain tumours are rare, representing less than 2% of all cancers. Despite improvements in treatment, their outcome remains poor. In some cases, an earlier diagnosis could provide greater opportunities to treat the disease, with better prognosis for patients.
In what is believed to be the first study to explore patient experiences along the pathway to primary brain tumour diagnosis, researchers at Cambridge carried out face-to-face talks with 39 adults recently diagnosed with a primary brain tumour (in other words, a cancer that has originated in the brain rather than one that has spread to it). In a semi-structured interview, participants reported on when and how initial symptoms were noticed, how these changed over time, their decision-making process to seek help, and their experience of the diagnostic process.
The researchers found that four main themes arose from the participants’ narratives:
- People experience ‘changes’ rather than symptoms, including changes in cognitive function, such as the ability to drive, text, read and write, as well as changes in sleep pattern.
- Participants reflected on noticing multiple changes prior to the diagnosis, as opposed to experiencing just a seizure or headache.
- Seizures and headaches are normally considered the two main symptoms, but it appears not all seizures are the same and few come ‘out of the blue’, according to the patients.
- The changes are often first noticed by family and friends, and are dismissed by patients thinking them to be signs of stress or age.
In some cases, the patient didn’t disclose the full range of changes in their wellbeing, either due to forgetfulness, time restrictions or because they didn’t think all the changes were important. Occasionally patients felt as though their views misaligned with the GP’s, and other possible diagnoses were investigated first. The GP’s response to the patient also had an impact on the decision to re-consult.
We hope these results will act as a springboard for further research to support and raise community symptom awareness. Ultimately, we want to encourage people to seek help earlier and for GPs to take brain cancer into consideration when presented with a patient displaying combinations of these subtle symptoms.”
– Dr Fiona Walter, lead author from the Department of Public Health and Primary Care
Based on the study’s results, the researchers would like to devise a questionnaire which they hope can be trialled across the UK. This would test which subtle symptoms and combinations may be more predictive of brain cancer to help GPs and neurologists in the longer term to make a more rapid diagnosis.
Funding in brain tumour research has greatly increased as a result of the parliamentary debate on the topic in 2016, after a public e-petition, the first of its kind ever discussed in parliament. Tessa Jowell, the former Secretary of State for Culture, Media and Sport, raised public awareness of brain tumours following her speech to parliament about her own experiences. Baroness Jowell died because of her brain tumour in 2018.
“Following the sad death of Tessa Jowell, the government gave a welcome boost to brain tumour research, doubling its investment,” said Dr Walter, lead author, from the Primary Care Unit at the University of Cambridge. “We need to capitalise on this recognition and do more as a research community to better understand and raise awareness of the early warning signs of disease, but also to explore further the impact of an early diagnosis on a patient’s wellbeing and prognosis.”
The research was funded by The Brain Tumour Charity. Dr David Jenkinson, Chief Scientific Officer for The Brain Tumour Charity, said: “Many people in our community tell us that their brain tumour diagnosis, or that of a loved one, came after a long period of worry and uncertainty about their health. Feeling that they could have been diagnosed earlier can add greatly to the fear and anxiety triggered by the diagnosis itself. This study is a welcome step towards improving our understanding of the factors that can delay a brain tumour diagnosis and how those might be addressed.”
Missed opportunities for diagnosing brain tumours in primary care? British Journal of General Practice; 12/03/2019
Media queries: Lucy Lloyd, Communications Manager, Primary Care Unit, University of Cambridge