Division of Diabetes, Endocrinology and Gastroenterology, School of Medical Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK; Department of Gastroenterology, Wrightington, Wigan, UK; Leigh NHS Trust, Wigan, UK.
Department of Gastroenterology, Wrightington, Wigan, UK; Leigh NHS Trust, Wigan, UK.
Lancet Gastroenterol Hepatol. 2018 Jan;3(1):57-65. doi: 10.1016/S2468-1253(17)30213-3. Epub 2017 Sep 29.
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.
巴雷特食管是一种慢性癌前病变,使患者易患食管腺癌,一旦发生侵袭性,预后不良。这种不良后果的可能性导致了强有力的监测和治疗途径的发展。巴雷特食管对预期寿命的真正影响和长期监测的效果仍存在争议。由于存在这些不确定性,且没有可靠的个体风险分层方法,患者必须持续接受监测,从而承受这种慢性疾病的负担。在这篇综述中,我们总结了有关患者对这种疾病及其护理途径的看法的主要发现。健康相关生活质量(HRQoL)测量已成为评估疾病影响、医疗保健提供质量和各种疾病治疗效果的有价值的指标。迄今为止的研究表明,与一般人群中的对照组相比,巴雷特食管患者的 HRQoL 评分显著降低。巴雷特食管患者的评分似乎与胃食管反流病患者的评分相似。症状控制似乎对最大化 HRQoL 很重要,但不是唯一因素。由于巴雷特食管患者中很少有经过验证和可靠的结局测量方法,因此大多数研究人员使用了通用和疾病特异性的 HRQoL 工具。这些方法可能忽略了巴雷特食管患者特有的重要未测量领域。从历史上看,随访护理使一些患者对疾病的了解不足、对癌症风险的认识不准确,以及不必要的心理负担。更深入地了解这些因素的普遍性以及确定针对这些患者的随访需求将有助于塑造未来的医疗保健提供,并改善患者体验。