Longitudinal Trends in Health-Related Quality of Life in Adults With Cystic Fibrosis
Longitudinal Trends in Health-Related Quality of Life in Adults With Cystic Fibrosis
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DOI：
10.1378/chest.12-1404
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发表时间：
2013-09-01
期刊：
影响因子：
9.6
通讯作者：
Sawicki, Gregory S.
中科院分区：
文献类型：
--
作者：
Dill, Edward J.;Dawson, Ree;Sawicki, Gregory S.
背景资料：健康相关生活质量（HRQOL）测量已被用作囊性纤维化（CF）临床试验中患者报告的结局，但CF成人HRQOL随时间变化的数据有限。囊性纤维化成人护理项目是一项前瞻性纵向小组研究，在美国10个CF中心对333名CF成人进行了疾病特异性HRQOL测量，囊性纤维化综合征-修订版（CFQ-R），21个月内7次。CFQ-R评估身体和心理健康领域。生长曲线回归模型开发的每个CFQ-R域，调整人口和临床characteristics.Results：205和303成人完成调查（响应率，70%-93%）。基线时的平均年龄为33岁（范围：19-64岁）;平均FEV1%预测值为59.8%（SD，22%）。在21个月的随访中，肺功能、肺部急性发作频率和营养指数与身体CFQ-R领域评分相关。身体领域评分随时间推移无显著人群趋势;然而，三个心理社会领域存在人群时间趋势：治疗负担（+8.9分/年）、情绪功能（+3.2分/年）和社会功能（-2.4分/年）。在身体和心理社会分量表的个体差异被认为是超过21 months.Conclusions：在纵向多中心人群的成年CF，临床变量，如FEV 1，加重频率和体重与相关的CFQ-R分量表。对于整个人群，CFQ-R的物理领域，如呼吸道症状，是稳定的。相比之下，CFQ-R的几个心理社会领域的人口变化表明，在评估患者报告的结果时，区分CF成人健康的身体和心理社会轨迹至关重要。
Background: Health-related quality-of-life (HRQOL) measures have been used as patient-reported outcomes in clinical trials in cystic fibrosis (CF), but there are limited data on HRQOL changes over time in adults with CF.Methods: The Project on Adult Care in Cystic Fibrosis, a prospective, longitudinal panel study of 333 adults with CF at 10 CF centers in the United States, administered a disease-specific HRQOL measure, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), seven times over 21 months. The CFQ-R assesses both physical and psychosocial domains of health. Growth curve regression models were developed for each CFQ-R domain, adjusting for demographic and clinical characteristics.Results: Between 205 and 303 adults completed surveys (response rate, 70%-93%). Mean age at baseline was 33 years (range, 19-64 years); mean FEV1 % predicted was 59.8% (SD, 22%). Over the 21 months of follow-up, lung function, frequency of pulmonary exacerbations, and nutritional indices were associated with physical CFQ-R domain scores. There were no significant population trends over time in the physical domain scores; however, there were population time trends in three psychosocial domains: treatment burden (+8.9 points/y), emotional functioning (+3.2 points/y), and social functioning (-2.4 points/y). Individual variation in both physical and psychosocial subscales was seen over 21 months.Conclusions: In a longitudinal multicenter population of adults with CF, clinical variables such as FEV1, exacerbation frequency, and weight were correlated with related CFQ-R subscales. For the population as a whole, the physical domains of CFQ-R, such as respiratory symptoms, were stable. In contrast, population changes in several psychosocial domains of CFQ-R suggest that differentiating between the physical and the psychosocial trajectories in health among adults with CF is critical in evaluating patient-reported outcomes.