Barrett’s oesophagus: a qualitative study of patient burden, care delivery experience and follow up needs

Background: Barrett’s oesophagus (BO), a precursor to oesophageal adenocarcinoma, requires long term endoscopic surveillance. The rising incidence of this chronic disease has implications for service provision and patient burden. Few studies have explored BO patients’ personal burden, care delivery experience and participation in healthcare delivery decisions.

Objective: To identify and explore factors impacting on BO patients’ health-related quality of life, follow up needs and views on new models of follow up care.

Design: An exploratory qualitative approach was adopted using semi-structured, in-depth one-to-one interviews; audio recorded and transcribed verbatim. Patients undergoing BO surveillance, at a single NHS Hospital, were recruited using purposive sampling with the aim of achieving maximum variation. Data were analysed using Framework analysis approach, supported by NVivo Pro 11.

Results: Data saturation occurred after 20 participant interviews. Ten subthemes and 3 main themes emerged from analysis: 1) Burden of disease – symptom control, worry of oesophageal cancer and surveillance endoscopy; 2) Follow up experiences – follow up care, at this NHS hospital, was found to be inconsistent and often inadequate to meet patients’ needs. In particular, a lack of disease specific information; 3) Follow up needs – participants sought enhanced communication, organisation and structure of care. They highly valued face to face interaction with a specialist and the concept of direct secondary care access in-between endoscopies was reassuring to participants.

Conclusions: This qualitative research provides an in-depth account of the patients’ perspective of BO, the effectiveness of follow up care and patient opinion on new follow up systems.