From Chest: Longitudinal Trends in Health-Related Quality of Life in Adults with Cystic Fibrosis

http://www.ncbi.nlm.nih.gov/pubmed/23670667

Chest. 2013 May 9. doi: 10.1378/chest.12-1404. [Epub ahead of print]

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

Dill EJ, Dawson R, Sellers DE, Robinson WM, Sawicki GS.

Abstract

ABSTRACT BACKGROUND:

Health-related quality of life (HRQOL) measures have been used as patient-reported outcomes in clinical trials in cystic fibrosis (CF), but there is limited data on HRQOL changes over time in adults with CF.

METHODS:

The Project on Adult Care in Cystic Fibrosis (PAC-CF), a prospective longitudinal panel study of 333 adults with CF at 10 CF centers in the US, administered a disease-specific HRQOL measure, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), 7 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 205-303 adults (response rate 70%- 93%) completed surveys. Mean age at baseline was 33 years (range 19-64); 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 physical domain scores. However, there were population time trends in 3 psychosocial domains: Treatment Burden (+8.9 points/year), Emotional Functioning (+3.2 points/year), and Social Functioning (-2.4 points/year). Individual variation was seen over 21 months in both physical and psychosocial subscales.

CONCLUSION:

In a longitudinal multi-center 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, 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 the physical and psychosocial trajectories in health among adults with CF is critical in evaluating patient-reported outcomes.