Villegas Leonela, Amaral Sandra
Division of Nephrology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA.
Division of Nephrology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA; Division of Epidemiology, Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania, Philadelphia, PA.
Semin Nephrol. 2021 Sep;41(5):476-484. doi: 10.1016/j.semnephrol.2021.09.010.
Patient-reported outcomes (PROs) are quantitative assessments of a patient's perspective on their health and are derived directly from the patient, as opposed to clinician interpretation. PROs can serve as unique tools to improve health care providers' understanding of the patient's daily lived experience and highlight salient domains that are specific to children with chronic kidney disease (CKD). As such, PROs fill an important gap in achieving optimal health and well-being for children with CKD. However, several knowledge gaps remain in the implementation of PROs within both the clinical and research realms. This review provides a broad overview of PRO development, implementation for children with CKD, and highlights future directions and challenges.
患者报告结局(PROs)是对患者健康状况的定量评估,直接源自患者自身,而非临床医生的解读。与临床医生的解读不同,PROs可作为独特工具,帮助医疗保健提供者更好地理解患者的日常生活体验,并突出慢性肾脏病(CKD)患儿特有的显著领域。因此,PROs在实现CKD患儿的最佳健康和福祉方面填补了重要空白。然而,在临床和研究领域实施PROs方面仍存在一些知识空白。本综述对PROs的发展、在CKD患儿中的实施情况进行了广泛概述,并强调了未来的方向和挑战。