Kim W R, Lindor K D, Malinchoc M, Petz J L, Jorgensen R, Dickson E R
Division of Gastroenterology and Hepatology, Mayo Clinic and Foundation, Rochester, MN, USA.
Hepatology. 2000 Nov;32(5):924-9. doi: 10.1053/jhep.2000.19067.
The NIDDK-QA instrument, developed and widely used in liver transplant recipients, assesses quality of life (QOL) in four domains, including liver disease symptoms, physical function, health satisfaction, and overall well-being. We investigated whether the instrument may be used as a disease-specific instrument in ambulatory patients with cholestatic liver disease. The NIDDK-QA instrument was administered in 96 patients with primary biliary cirrhosis (PBC) and primary sclerosing cholangitis (PSC) seen at the Mayo Clinic. The SF-36, a well-established generic instrument, was also administered. Standard measures for test-retest reliability, internal consistency, and discriminant and concurrent validity were examined. All patients were ambulatory with mostly normal levels of serum bilirubin and albumin concentrations. The reliability of the NIDDK-QA, as measured by test-retest correlation (Pearson coefficients: 0.82-0.99, P <.01) and by internal consistency (Cronbach's alpha: 0.87-0.94) exceeded conventional acceptability criteria. The correlation between domain scores of the NIDDK-QA and SF-36 was clear and logical in that the physical function domain of NIDDK-QA strongly correlated with the physical component summary score of SF-36 (r = 0.86, P <.01). The overall well-being domain of the NIDDK-QA was closely associated with the mental summary score of SF-36 (r = 0.69, P <.01). Among PBC patients, there was a modest yet significant correlation between the Mayo risk score and overall well-being (r = -0.26, P =.03). In the assessment of QOL in patients with cholestatic liver disease, NIDDK-QA is found reliable and valid. These data, combined with our previous study, demonstrate its applicability in a wide spectrum of disease severity, ranging from early, ambulatory-phase disease to decompensated cirrhosis necessitating liver transplantation.
NIDDK-QA工具是专门为肝移植受者开发并被广泛使用的，它从四个领域评估生活质量（QOL），包括肝病症状、身体功能、健康满意度和总体幸福感。我们研究了该工具是否可作为胆汁淤积性肝病门诊患者的疾病特异性工具。对梅奥诊所的96例原发性胆汁性肝硬化（PBC）和原发性硬化性胆管炎（PSC）患者使用了NIDDK-QA工具。同时还使用了成熟的通用工具SF-36。检验了重测信度、内部一致性、判别效度和同时效度的标准指标。所有患者均为门诊患者，血清胆红素和白蛋白浓度大多正常。通过重测相关性（Pearson系数：0.82 - 0.99，P <.01）和内部一致性（Cronbach's α：0.87 - 0.94）测量，NIDDK-QA的信度超过了传统可接受标准。NIDDK-QA各领域得分与SF-36之间的相关性清晰且合理，即NIDDK-QA的身体功能领域与SF-36的身体成分汇总得分强烈相关（r = 0.86，P <.01）。NIDDK-QA的总体幸福感领域与SF-36的心理汇总得分密切相关（r = 0.69，P <.01）。在PBC患者中，梅奥风险评分与总体幸福感之间存在适度但显著的相关性（r = -0.26，P =.03）。在评估胆汁淤积性肝病患者的生活质量时，发现NIDDK-QA可靠且有效。这些数据与我们之前的研究相结合，证明了其在从早期门诊阶段疾病到需要肝移植的失代偿期肝硬化等广泛疾病严重程度范围内的适用性。
