Longitudinal Trends in Health-Related Quality of Life in Adults With Cystic Fibrosis

被引:51
作者
Dill, Edward J. [1 ,2 ]
Dawson, Ree [3 ]
Sellers, Deborah E. [5 ]
Robinson, Walter M. [5 ]
Sawicki, Gregory S. [4 ]
机构
[1] Univ Colorado Anschutz Med Campus, Colorado Sch Publ Hlth, Ctr Amer Indian, Aurora, CO USA
[2] Univ Colorado Anschutz Med Campus, Colorado Sch Publ Hlth, Ctr Alaska Native Hlth, Aurora, CO USA
[3] Frontier Sci & Technol Res Fdn Inc, Boston, MA USA
[4] Harvard Univ, Childrens Hosp, Sch Med, Div Resp Dis, Boston, MA 02115 USA
[5] Educ Dev Ctr Inc, Ctr Appl Eth, Newton, MA USA
关键词
INHALED AZTREONAM LYSINE; PULMONARY EXACERBATIONS; PSEUDOMONAS-AERUGINOSA; AIRWAY PSEUDOMONAS; QUESTIONNAIRE; CHALLENGES; DIFFERENCE; VALIDATION; BURDEN; IMPACT;
D O I
10.1378/chest.12-1404
中图分类号
R4 [临床医学];
学科分类号
1002 ; 100602 ;
摘要
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.
引用
收藏
页码:981 / 989
页数:9
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