A University of Manchester study of care provisions for patients diagnosed with Barrett’s oesophagus, a pre-cancerous condition, has resulted in improvements in local NHS care, which may form a blueprint for other hospitals.
The condition where cells lining the food pipe grow abnormally, is often linked with acid reflux and, in a small number of patients, can progress to cancer.
Barrett’s is the only known precursor to a type of cancer called oesophageal adenocarcinoma which, unlike most other cancers, is currently increasing in the number of people affected every year.
Patients diagnosed with Barrett’s have been identified as a key at-risk group for monitoring to improve early diagnosis rates for oesophageal cancer.
The study, led by Dr. James Britton, found that provisions and support for patients diagnosed with this condition were inadequate.
It is published in the journal Health Expectations.
Due to insufficient and inconsistent care, many patients felt poorly informed with some lacking confidence in their ability to self-manage their condition.
The study was supported by Covidien and led by researchers based at Wrightington, Wigan and Leigh NHS Foundation Trust and The University of Manchester.
Patients spoke to researchers about their condition and treatment experiences in semi-structured and in-depth one-to-one interviews.
Dr. Britton said: “Listening to patients’ experiences and concerns has contributed towards significant changes in care provisions for Barrett’s patients at this NHS trust, with a dedicated service now in place.”
If caught early, oesophageal adenocarcinomas are treatable using minimally invasive endoscopic techniques. This treatment is very effective and durable with only 1-2 percent of patients subsequently developing invasive cancer.
However, prognosis is very poor if the condition is not caught early.
Long-term monitoring means that these patients need to undergo regular invasive endoscopic procedures, which can have a significant impact on their quality of life.
“These patients carry a heavy burden of regular invasive procedures, symptom flare-ups, and worry of disease progression to cancer,” says Dr. Britton.
“Despite this burden, they remain a forgotten patient group. Many don’t receive adequate information about their condition and their care is often inconsistent with no central lynchpin.
“This current standard of practice for Barrett’s patients is likely to be endemic across NHS hospitals”
The minority of patients in this study who self-reported as having adequate knowledge of their condition and its implications, showed a lower tendency towards cancer-related worries.
This suggests that well informed patients are less likely to experience reduced quality of life due to chronic and unnecessary cancer related worry.
“This should be the norm” states Dr. Britton.
Patient-centred care and tailoring services around patient’s needs has already led to improved care for patients living with other chronic conditions, for example Inflammatory Bowel Disease.
These improvements have been shown to enhance patient self-management of disease flares, reduce hospital admissions, GP appointments and hospital appointments leading to large cost savings.
Dr. Britton added: “We found a clear appetite for a Barrett’s focused services which could bridge the gap between GP and hospital care; providing information and dedicated patient support between surveillance tests”
“We now want to take our findings to other hospitals. We hope that a large multi-centre study will enable us to influence clinical guidelines and provisions for Barrett’s care across the UK, and improve more patients’ experiences with this condition. ”
Paper: James Britton et al. Barrett’s oesophagus: A qualitative study of patient burden, care delivery experience and follow-up needs, Health Expectations (2018). DOI: 10.1111/hex.12817