The Survey on the Unmet Needs of Patients Living with Oesophageal or Gastric Cancer

In 2015 EuropaColon, now Digestive Cancers Europe began actively to work more with other digestive cancers. We began first in pancreatic cancer and already support many activities taking place across Europe. Our second step was to look at oesophageal and gastric cancers. Both cause considerable difficulties to citizens across Europe as more and more people are diagnosed with either of these cancers.

But as we did our research, we found very little information and even less support for patients and carers in Europe. To help us understand how we can better serve anyone diagnosed with these cancers, we have asked patients to help us by way of completing our survey.

The survey was finalised last year, and the results have now been analysed. We would like to thank all patients who took part – your help in making a difference to the lives of other patients in the future cannot be underestimated. We would also like to thank our Member organisations and all clinicians across Europe for their support in disseminating and conducting the survey.

We have recently presented in collaboration with our Members from Italy (Vivere senza Stomaco si puo), Poland (EuropaColon Polska), and Spain (Association Against Gastric Cancer and Gastrectomized Patients, ACCGG) key results of the survey at the European Society for Medical Oncology (ESMO) World Congress on Gastrointestinal Cancer 2021. The meeting was held virtually this past July.

The survey has helped us identify that:

• The most frequent symptoms that patients with gastric or oesophageal cancer experience, include indigestion/gastric discomfort; gastric pains; and trouble swallowing.
• Although the majority of patients were satisfied with the time it took to receive their diagnosis, 41% of patients were initially misdiagnosed as having another condition.
• Important gaps in the gastric/oesophageal patient journey include an expansion in the support services to include key elements that are overlooked in the patient journey such as:

• nutritional support for patients
• emotional support – for both patients and carers

We are now working on producing a full manuscript to publish it in a scientific journal with the aim to raise awareness among healthcare professionals about gastric and oesophageal patients’ overlooked needs in Europe.