METHODS: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, Scopus and Web of Science from inception to 6th July 2023; supplemented with grey literature searches. Two reviewers independently screened search hits; outputs reporting patient-reported measures of multiple aspects of established solid organ transplantation healthcare were eligible. We abstracted measure context, characteristics, content (i.e., attributes of patient experience assessed), and development and validation processes.
RESULTS: We identified nine outputs reporting eight measures of patient experience; these related only to kidney (n = 5) or liver (n = 3) transplantation, with no available measures relating to heart, lung, pancreas or intestinal transplantation. Of the identified measures, four were specific to solid organ transplant recipients. Measures sought to assess \"patient satisfaction\" (n = 4) and \"patient experience\" (n = 4) of healthcare. Measures mapped to between five and 16 of 20 attributes of patient experience, most often Information and education, Communication, and Access to care (all n = 7). Six measures reported a development process, only three reported a validation process.
CONCLUSIONS: Publicly available patient-reported measures of organ transplantation healthcare experiences are limited to kidney and liver transplantation. There is heterogeneity in measure context, characteristics, and content, and insufficient clarity concerning how well measures capture the specific experiences of transplant recipients. Formalised measures of patient experience, specific to solid organ transplantation, with transparent reporting of development and validity are needed.
方法:我们系统地搜索了MEDLINE,Embase,CINAHL,PsycINFO,科克伦中部,Scopus和WebofScience从成立到2023年7月6日;补充了灰色文献搜索。两名审阅者独立筛选了搜索命中;报告患者报告的已建立实体器官移植医疗保健的多个方面的措施的输出符合资格。我们抽象了度量上下文,特点,内容(即,评估患者体验的属性),以及开发和验证过程。
结果:我们确定了9个输出,报告了8个患者体验指标;这些仅与肾脏(n=5)或肝脏(n=3)移植有关。没有关于心脏的可用措施,肺,胰腺或肠移植。在确定的措施中,其中4例针对实体器官移植受者.旨在评估医疗保健的“患者满意度”(n=4)和“患者体验”(n=4)的措施。映射到患者体验的20个属性中的5到16个属性的度量,最常见的信息和教育,Communication,和获得护理(所有n=7)。六项措施报告了一个发展过程,只有三人报告了验证过程。
结论:公开可用的患者报告的器官移植医疗经验措施仅限于肾脏和肝脏移植。度量背景存在异质性,特点,和内容,以及关于措施如何很好地捕获移植接受者的具体经历的不清楚。患者经验的形式化测量,特定于实体器官移植,需要透明地报告发展和有效性。