Department of Gastroenterology and Hepatology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands.
Department of Medical Psychology, Academic Medical Center, Amsterdam, The Netherlands.
Qual Life Res. 2022 Jun;31(6):1639-1656. doi: 10.1007/s11136-021-03009-7. Epub 2021 Nov 8.
Barrett esophagus (BE) is associated with a significant decrease of health-related quality of life (HRQoL). Too often, patient-reported outcome measures (PROMs) are applied without considering what they measure and for which purposes they are suitable. With this systematic review, we provide researchers and physicians with an overview of all the instruments previously used for measuring HRQoL in BE patients and which PROMs are most appropriate from the patient's perspective.
A comprehensive search was performed to identify all PROMs used for measuring HRQoL in BE patients, to identify factors influencing HRQoL according to BE patients, and to evaluate each PROM from a patients' perspective.
Among the 27 studies, a total of 32 different HRQoL instruments were identified. None of these instruments were designed or validated for use in BE patients. Four qualitative studies were identified exploring factors influencing HRQoL in the perceptions of BE patients. These factors included fear of cancer, anxiety, trust in physician, sense of control, uncertainty, worry, burden of endoscopy, knowledge and understanding, gastrointestinal symptoms, sleeping difficulties, diet and lifestyle, use of medication, and support of family and friends.
None of the quantitative studies measuring HRQoL in BE patients sufficiently reflected the perceptions of HRQoL in BE patients. Only gastrointestinal symptoms and anxiety were addressed in the majority of the studies. For the selection of PROMs, we encourage physicians and researchers measuring HRQoL to choose their PROMs from a patient perspective and not strictly based on health professionals' definitions of what is relevant.
巴雷特食管（BE）与健康相关生活质量（HRQoL）显著下降有关。患者报告结局测量（PROM）经常被应用，但却没有考虑到它们所测量的内容以及适合的用途。通过本系统评价，我们为研究人员和医生提供了一份全面的综述，介绍了之前用于测量 BE 患者 HRQoL 的所有工具，以及从患者角度来看哪些 PROM 最合适。
进行了全面的检索，以确定所有用于测量 BE 患者 HRQoL 的 PROM，确定影响 BE 患者 HRQoL 的因素，并从患者角度评估每个 PROM。
在 27 项研究中，共确定了 32 种不同的 HRQoL 工具。这些工具都不是为 BE 患者设计或验证的。确定了四项定性研究，以探讨影响 BE 患者 HRQoL 的因素。这些因素包括对癌症的恐惧、焦虑、对医生的信任、控制感、不确定性、担忧、内镜检查负担、知识和理解、胃肠道症状、睡眠困难、饮食和生活方式、药物使用以及家人和朋友的支持。
没有一项用于测量 BE 患者 HRQoL 的定量研究充分反映了 BE 患者对 HRQoL 的感知。只有胃肠道症状和焦虑在大多数研究中得到了关注。对于 PROM 的选择，我们鼓励测量 HRQoL 的医生和研究人员从患者的角度选择 PROM，而不仅仅是基于卫生专业人员对相关内容的定义。
