生活质量（QoL）评估对于评估接受家庭肠外和肠内营养（HPEN）治疗的患者的干预效果很重要。这次范围审查的目的是描述，评估，并推荐接受HPEN的成年患者使用QoL仪器。我们使用了Arksey和O\'Malley框架，并在五个数据库中进行了文献检索(PubMed，CINAHL,EMBASE,WebofScience,和Cochrane图书馆）以确定可能的相关文章，这些文章侧重于接受HPEN的成年患者的QoL。在符合全文筛选条件的研究中，两名独立研究人员提取数据。确定了27种QoL仪器，由七个通用文书组成，12种疾病特异性仪器，和八种治疗专用仪器。ShortForm-36是最广泛使用的通用仪器，欧洲癌症研究和治疗组织QLQ-C30是最常用的疾病特异性仪器。最近开发的特定治疗工具，NutriQoL和HPN-QoL，越来越多地单独或与其他类型的仪器结合使用。总结了每种仪器的重要方面，以帮助临床医生和研究人员在测量成年HPEN患者的QoL时选择合适的仪器。研究结果还可以帮助确定开发新工具或修改现有工具以测量HPEN患者的QoL的必要性。
Quality of life (QoL) assessment is important to evaluate the effect of the intervention for patients treated with home parenteral and enteral nutrition (HPEN). The purpose of this scoping review is to describe, evaluate, and recommend QoL instruments used in adult patients receiving HPEN. We used the Arksey and O\'Malley framework and performed literature searches in five databases (PubMed, CINAHL, EMBASE, Web of Science, and Cochrane Library) to identify possibly relevant articles that focused on QoL of adult patients receiving HPEN. Of the studies that qualify for full-text screening, two independent researchers extracted data. Twenty-seven QoL instruments were identified, consisting of seven generic instruments, 12 disease-specific instruments, and eight therapy-specific instruments. The Short Form-36 was the most widely used generic instrument and the European Organization for Research and Treatment of Cancer QLQ-C30 was the most commonly employed disease-specific instrument. The recently developed therapy-specific tools, NutriQoL and HPN-QoL, were increasingly employed in studies either alone or in combination with other types of instruments. Important aspects of each instrument were summarized to aid clinicians and researchers in selecting an appropriate instrument when measuring the QoL of adult HPEN patients. Findings could also help to identify the necessity to develop new tools or to modify pre-existing ones to measure QoL of HPEN patients.
