Tang Evan, Bansal Aarushi, Novak Marta, Mucsi Istvan
Multi-Organ Transplant Program, Division of Nephrology, University Health Network, Toronto, ON, Canada.
Institute of Medical Sciences, University of Toronto, Toronto, ON, Canada.
Front Med (Lausanne). 2018 Jan 15;4:254. doi: 10.3389/fmed.2017.00254. eCollection 2017.
Chronic kidney disease (CKD) is a complex medical condition that is associated with several comorbidities and requires comprehensive medical management. Given the chronic nature of the condition, its frequent association with psychosocial distress, and its very significant symptom burden, the subjective patient experience is key toward understanding the true impact of CKD on the patients' life. Patient-reported outcome measures are important tools that can be used to support patient-centered care and patient engagement during the complex management of patients with CKD. The routine collection and use of patient-reported outcomes (PROs) in clinical practice may improve quality of care and outcomes, and may provide useful data to understand the disease from both an individual and a population perspective. Many tools used to measure PROs focus on assessing health-related quality of life, which is significantly impaired among patients with CKD. Health-related quality of life, in addition to being an important outcome itself, is associated with clinical outcomes such as health care use and mortality. In Part 1 of this review, we provide an overview of PROs and implications of their use in the context of CKD. In Part 2, we will review the selection of appropriate measures and the relevant domains of interest for patients with CKD.
慢性肾脏病(CKD)是一种复杂的病症,与多种合并症相关,需要综合医疗管理。鉴于该病症的慢性性质、常与心理社会困扰相关以及其非常显著的症状负担,患者的主观体验对于理解CKD对患者生活的真正影响至关重要。患者报告结局测量是重要工具,可用于在CKD患者的复杂管理过程中支持以患者为中心的护理和患者参与。在临床实践中常规收集和使用患者报告结局(PROs)可能会改善护理质量和结局,并可能从个体和人群角度提供有用数据以了解该疾病。许多用于测量PROs的工具侧重于评估健康相关生活质量,而CKD患者的健康相关生活质量受到显著损害。健康相关生活质量除了本身是一个重要结局外,还与诸如医疗保健利用和死亡率等临床结局相关。在本综述的第1部分,我们概述了PROs及其在CKD背景下使用的意义。在第2部分,我们将回顾为CKD患者选择合适的测量方法和相关感兴趣领域。