Tong Allison, Sainsbury Peter, Chadban Steven, Walker Rowan G, Harris David C, Carter Stacy M, Hall Bronwyn, Hawley Carmel, Craig Jonathan C
NHMRC Centre for Clinical Research Excellence in Renal Medicine, Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
Am J Kidney Dis. 2009 Apr;53(4):689-700. doi: 10.1053/j.ajkd.2008.10.050. Epub 2009 Feb 11.
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.
在医疗保健决策中明确纳入患者的价值观和偏好非常重要。然而，关于慢性肾脏病（CKD）患者这一主题的数据却很少。我们开展了9个焦点小组讨论（CKD 1至5期、CKD 5D期以及CKD 1至5T期各3个）。确定了五个主要主题：（1）CKD的个人意义，（2）健康管理与监测，（3）生活方式影响，（4）家庭影响，以及（5）非正式支持结构。患者必须适应疾病对其身体健康、身份认同、情绪、家庭、生活方式、人际关系和就业造成的破坏性和永久性影响。极度疲劳、复杂的治疗方案、副作用以及液体和饮食限制束缚了患者的生活。患者赞赏专科护理，但认为医疗保健系统缺乏整合性，并且觉得自己得到的信息和社会心理支持不足。治疗方案的选择基于生活方式、家庭影响和身体舒适度，很少基于临床结果。患者需要时间来理解诊断结果、应对不确定性、将治疗方案融入日常生活，并重新建立生活中的正常感。与其关注临床指标，或许更需要在患者层面而非器官特定层面提供信息以及社会心理和实际支持，以最大限度提高患者的生活质量。
