How can the NHS achieve better outcomes for EoE patients?

What is EoE?

Eosinophilic oesophagitis is a chronic inflammatory condition of the oesophagus where more than a number of years people find swallowing certain solid foods increasingly difficult. It’s diagnosed by finding cells called eosinophils in the lining of the oesophagus.

The incidence of EoE is rising rapidly. In the UK, about seven-eight patients per 100,000 are diagnosed each year and in most cases, the disease persists indefinitely. It is now the second most common inflammatory disease of the oesophagus after gastro-oesophageal reflux disease (GORD).¹

Patients with EoE will typically present into accident and emergency departments with chest pain or a food blockage, known as a food bolus obstruction (FBO) which causes the patient distress, or they may present to their GP with dysphagia – a difficulty in swallowing.

How do patients present with EoE?

“The symptoms of EoE can be slow and insidious. Talking to patients, we realise symptoms can go way back – they tell us they were the sickly child who avoided certain foods and no-one really knew why; which evolved into them being a fussy eater; the person who drank loads of fluids with every meal; the last person to leave the table; socially awkward about eating and avoiding social situations. They may seek advice but not really be able to describe the issue, and then be diagnosed with such things as reflux or food regurgitation. With the inability of patients to describe the symptoms, and the lack of knowledge on the part of GPs on how to diagnose EoE, people can go round the system several times” continued Amanda Cordell, chief executive officer of EOS Network, Eosinophilic Diseases Charity. Many have a history of previous atopic diseases.

About a third of patients have an FBO as the first symptom they report to health services. Many go to A&E with the condition; others will go to their GP, and then are referred to hospital services, often for an endoscopy.

“Food bolus obstruction can be a frightening experience for patients, and it is proving a real challenge to co-ordinate treatment in the modern NHS”, said Hasan Haboubi, consultant gastroenterologist at Cardiff and Vale University Health Board.

Over the years, patients may or may not be referred to a gastroenterologist; they may or may not be given a biopsy; and they may not be given the six biopsies we now know they need in order to diagnose EoE. Often, patients face a continuing cycle of events without getting a diagnosis, with repeat attendances at A&E without appropriate investigation, where some are referred to ear, nose and throat departments and many are sent back to their GP. These routes do not adequately address the proclivity to FBO that EoE patients suffer.

So, one of the principal challenges in managing EoE is ensuring awareness among this disparate group of clinicians, to get such patients onto the right pathway – timely endoscopy, biopsy and EoE diagnosis – which can then be treated according to the evidence base.

What is the main issue of managing patients when discharged from hospital?

Secondary care clinicians are becoming better at diagnosing EoE patients: but they will often discharge them into the community where they will become “lost to follow-up”. There is frequent inconsistency in how management plans are applied once a patient has been discharged. Some patients are given an ongoing prescription to manage the condition which they collect from hospitals – but they are described by Ms Cordell as “the lucky ones”. Many are given a three-month supply but then are discharged, with some having only annual reviews. If shared care formularies and plans were in place, this would ensure continued access to appropriate treatment for patients, and reduced relapses or hospital attendances.

“The BSG guidelines have definitely created an improvement - and now there are treatments available, endorsed by the guidelines”, said Dr Haboubi.

What should NHS systems do?

Signposting and awareness of the disease are big initial areas for improvement for NHS systems. But more than that, the group painted a picture of wide variation in how patients are managed nationally.

A clear EoE consensus pathway of how these patients should be managed once diagnosed has been agreed by a leading group of clinicians. This will improve the patient experience, reduce unnecessary patient hospital visits for prescriptions and ultimately reduce the burden on secondary care. The next step is to implement these pathways in the new NHS integrated care system organisations.

References

1. Wong S, Ruszkiewicz A, Holloway RH, Nguyen NQ. Gastro-oesophageal reflux disease and eosinophilic oesophagitis: What is the relationship? World J Gastrointest Pathophysiol. 2018 Oct 25;9(3):63-72.