Patients' Experiences and Perspectives of Living With CKD
Patients' Experiences and Perspectives of Living With CKD
复制标题
DOI：
10.1053/j.ajkd.2008.10.050
复制
发表时间：
2009-04-01
影响因子：
13.2
通讯作者：
Craig, Jonathan C.
中科院分区：
文献类型：
--
作者：
Tong, Allison;Sainsbury, Peter;Craig, Jonathan C.
明确纳入患者的价值观和偏好在卫生保健决策中很重要。然而，关于慢性肾脏疾病(CKD)患者的这一主题的数据很少。我们进行了9个焦点小组(CKD阶段1到5、CKD阶段5D和CKD阶段1到5T各3个)。确定了五个主要主题：(1)慢性KD的个人意义，(2)管理和监测健康，(3)生活方式后果，(4)家庭影响，(5)非正式支持结构。患者必须适应疾病对他们的身体健康、身份、情感、家庭、生活方式、关系和就业的破坏性和永久性影响。不堪重负的疲劳、复杂的治疗方案、副作用以及液体和饮食限制限制了患者的生活。患者欣赏专科护理，但描述医疗保健系统不完整，并认为他们没有得到足够的信息和心理社会支持。治疗的选择是基于生活方式、家庭影响和身体舒适度，很少是基于临床结果。需要时间来理解诊断，应对不确定性，将他们的治疗方案融入他们的日常生活，并重新建立他们生活中的正常感。与其把重点放在临床目标上，可能需要更多地关注在患者层面而不是特定器官层面上提供信息、心理社会和实际支持，以最大限度地提高患者的生活质量。Am J肾脏病53：689-700。(C)2009年，由国家肾脏基金会公司提供。
Explicit incorporation of patients' values and preferences is important in health care decision making. However, there are few data about this topic for patients with chronic kidney disease (CKD). We conducted 9 focus groups (3 each for CKD stages 1 to 5, CKD stage 5D, and CKD stages 1 to 5T). Five major themes were identified: (1) personal meaning of CKD, (2) managing and monitoring health, (3) lifestyle consequences, (4) family impact, and (5) informal support structures. Patients had to adjust to the disruptive and permanent implications of the illness on their physical health, identity, emotions, family, lifestyle, relationships, and employment. The overwhelming fatigue, complex treatment regimens, side effects, and liquid and diet restrictions constrained patients' lives. Patients appreciated specialist care, but described the health care system as nonintegrated and believed they received insufficient information and psychosocial support. Choice of treatments was based on lifestyle, family impact, and physical comfort, seldom on clinical outcomes. Time was needed to comprehend the diagnosis, cope with uncertainty, integrate their treatment regimen into their daily routine, and reestablish a sense of normality in their lives. Rather than focusing on clinical targets, greater attention may need to be given to providing information and psychosocial and practical support at a patient-level not organ-specific level, to maximize patient quality of life. Am J Kidney Dis 53:689-700. (C) 2009 by the National Kidney Foundation, Inc.