Barrett's oesophagus is a chronic precancerous condition that predisposes patients to the development of oesophageal adenocarcinoma, which, once invasive, carries a poor prognosis. This likelihood of a negative outcome has led to the development of robust surveillance and treatment pathways. The true effect of Barrett's oesophagus on life expectancy and the efficacy of long-term surveillance remains under debate. With these uncertainties and no reliable methods of individual risk stratification, patients must be continually monitored and thus carry the burden of this chronic disease. In this Review, we summarise the major findings concerning the patients' perspective of this disease and its care pathways. Health-related quality of life (HRQoL) measurement has become a valuable metric to assess the effects of disease, the quality of health-care delivery, and treatment efficacy across various disease settings. Research to date has shown significant reductions in HRQoL scores related to Barrett's oesophagus compared with controls from the general population. The scores of patients with Barrett's oesophagus seem to be similar to those of patients with gastro-oesophageal reflux disease. Symptom control appears to be important, but not the only factor, in maximising HRQoL. Most researchers have used generic and disease-specific HRQoL instruments because there are few outcome measures that are validated and reliable in patients with Barrett's oesophagus. These methodologies potentially overlook crucial unmeasured areas that are specific to patients with Barrett's oesophagus. Historically, follow-up care has left some patients with insufficient understanding of the disease, inaccurate perceptions of cancer risk, and an unnecessary psychological burden. A greater understanding of the prevalence of these factors and identification of follow-up needs specific to these patients will help to shape future health-care delivery and improve patient experience.
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