‘Why don’t we get counselling?’
For the past four years, I have been doing research with people who have been diagnosed with Barrett’s oesophagus, a condition that can potentially slightly increase a person’s risk of oesophageal cancer. My research is about how people are diagnosed and live with Barrett’s.
After conducting tens of interviews and spending time in support groups, I was struck by the huge fear that some Barrett’s patients experience. I heard countless stories of losing sleep to worrying and obsessively researching cancer progression. Patients’ loved ones also sometimes became really worried about their future. Some patients described feeling that the care offered by their doctors did not help them manage their fear. This led some to join support groups.
Barrett’s oesophagus is just one diagnosis that can increase a person’s risk of cancer. There have been efforts in recent years to diagnose other cancer risk conditions, particularly genetic ones. One example is BRCA1/2 mutations which increase a person’s risk of several cancers, including breast cancer, ovarian cancer, prostate cancer and pancreatic cancer. BRCA1/2 mutations have received a lot of media attention in recent years, particularly after Angelina Jolie spoke publicly about her experiences of being diagnosed.
There are lots of similarities between these conditions. Both BRCA1/2 and Barrett’s are diagnosed in the hope of offering surveillance and/or risk reducing treatments that might prevent cancers from developing in the future. But a key difference is that people who are diagnosed with genetic conditions like BRCA1/2 are offered specialist genetic counselling before and after their diagnosis. This can help people understand their risk and help manage their anxiety. In comparison, no specialist support is offered to people with Barrett’s, even though experiences of worrying following a diagnosis of cancer risk can be very similar.
I set out to consider why these differences in care might exist by comparing the care offered to people diagnosed with BRCA1/2 and Barrett’s. I concluded that the main reason for this difference in care seems to be historical. Genetic testing was considered to be novel when it was invented in the 1950s. This led to a lot of research into the social and ethical issues concerning genetic risk diagnoses, which resulted in the creation of genetic counselling.
In contrast, the technologies used to diagnose Barrett’s are older and have not received the same sort of ethical consideration. It seems that for some patients there may still be a need for specialist support for people with Barrett’s – a need that is not currently being met.
My research hopes to encourage policymakers and doctors to consider implementing further psychological care for people with Barrett’s oesophagus in the future.
Elspeth Davies
Guest Blogger
Elspeth recently received her PhD from the University of Cambridge. She is now a researcher at the Nuffield Department of Primary Care Health Sciences, University of Oxford, where her work explores the social and ethical issues surrounding new and existing cancer screening programmes. Her research was published online here.
