Unruh Mark L, Hess Rachel
Department of Medicine, Renal-Electrolyte Division, University of Pittsburgh Medical Center, Pittsburgh, PA 15261, USA.
Adv Chronic Kidney Dis. 2007 Oct;14(4):345-52. doi: 10.1053/j.ackd.2007.07.011.
The health-related quality of life (HRQOL) of patients with chronic kidney disease influences the timing of the initiation of dialysis, whether they continue to work with progressive kidney failure and whether they maintain an active role in the home and community. The importance of HRQOL to the goals of therapy has been widely documented for dialysis patients who chose not to receive a kidney transplant and those with substantial comorbidities who are not candidates for kidney transplantation, patients who are confined to the chronic rigors of maintenance dialysis. The usual conceptualization of HRQOL has been based on the World Health Organization's definition of QOL as a complete state of physical, mental, and social well-being and not merely an absence of disease in infirmity. This conceptual model has limitations because few standard HRQOL questionnaires assess satisfaction with family despite being a critical domain to patients. Measuring and monitoring HRQOL in CKD patients can be achieved with the widespread implementation of facile HRQOL assessment. The importance of HRQOL has been increasingly recognized by health care payers, health care providers, regulatory agencies, and researchers, both within and outside the renal community. Despite the apparent need and potential benefits of HRQOL assessments in dialysis patients, there are limitations to the translation of such assessments from the research domain into the clinical arena such as the length of questionnaires and display of the information at the point of care. These limitations can be addressed through the development of computer-adaptive testing (CAT). CAT permits the response of the patient to inform the selection of the next question. In this way, the length of HRQOL questionnaires may be dramatically shortened while not sacrificing the sensitivity or reliability of a longer instrument. The routine use of HRQOL assessments in the care of patients with CKD represents an important opportunity for the nephrologist to better incorporate the values and concerns of the patient into their care.
慢性肾脏病患者的健康相关生活质量（HRQOL）会影响透析开始的时机、他们是否能在肾衰竭进展过程中继续工作以及他们能否在家庭和社区中保持积极的角色。对于选择不接受肾移植的透析患者、因合并症严重而不适合肾移植的患者以及长期接受维持性透析的患者而言，HRQOL对治疗目标的重要性已得到广泛记录。HRQOL的通常概念基于世界卫生组织对生活质量的定义，即身体、心理和社会福祉的完整状态，而不仅仅是体弱多病时没有疾病。这种概念模型存在局限性，因为尽管家庭满意度对患者来说是一个关键领域，但很少有标准的HRQOL问卷对其进行评估。通过广泛实施简便的HRQOL评估，可以实现对CKD患者HRQOL的测量和监测。医疗保健支付方、医疗保健提供者、监管机构以及肾脏领域内外的研究人员越来越认识到HRQOL的重要性。尽管对透析患者进行HRQOL评估有明显需求和潜在益处，但将此类评估从研究领域转化到临床领域存在局限性，例如问卷长度以及在护理点展示信息的问题。这些局限性可以通过开发计算机自适应测试（CAT）来解决。CAT允许根据患者的回答来选择下一个问题。这样，HRQOL问卷的长度可以大幅缩短，同时又不牺牲较长问卷的敏感性或可靠性。在CKD患者护理中常规使用HRQOL评估，对肾病学家来说是一个重要机会，可更好地将患者的价值观和关注点纳入其护理工作中。
