Chest
Clinical InvestigationsCystic FibrosisImpact of Recent Pulmonary Exacerbations on Quality of Life in Patients With Cystic Fibrosis
Section snippets
Study Population
Subjects were recruited from the pediatric and adult CF clinics of a midwestern medical school. All patients who were ≥ 5 years old and who had not undergone lung transplantation were invited to participate. Patients were enrolled during routine quarterly clinic visits. For those who had no clinic visits during the 27-month enrollment period or who were missed by study personnel, attempts were made to enroll by mail or telephone. Overall, 162 of 191 eligible patients (83.9%) participated. Three
Results
Table 1 summarizes the demographic and clinical characteristics of the participants based on the questionnaire they completed (SF-36, PF-50, or CF-87). Sixty-three children aged 10 to 17 years completed the CF-87. One hundred fourteen parents (84% mothers) of children aged 5 to 17 years completed the PF-50. Tables 234 present the mean, SD, range, quartiles, and percent at the floor and ceiling for each scale and for the summary scores. The highest mean scores (93.5) were for the role
Discussion
Pulmonary exacerbations of CF had a profound negative impact on physical and psychosocial HRQOL. Other traditional severity measures such as FEV1 percent predicted and nutritional indexes were not associated with significant differences in HRQOL, although most trends were in the expected direction. On average, those with FEV1 percent predicted ≤ 70 had physical scores 3 points lower than those with higher FEV1 percent predicted. We had 80% statistical power to detect a 3- to 4-point difference
Conclusion
Recent pulmonary exacerbations are the most important factor determining physical and psychosocial HRQOL in the patients with CF who we studied. Other traditional severity measures had less impact, at least in this cross-sectional analysis. Overall, the CHQ and the SF-36 appear to be well suited for use in the CF population, except for the role-function scales, where ceiling effects limit their usefulness. Generic HRQOL measures, such as these, will complement the CF-specific measures now being
ACKNOWLEDGMENT
We thank the patients and clinical staff of Children's Hospital Medical Center and University of Cincinnati CF Centers for participating; Debbie Stewart, Angie Duggins, Jennifer Fende, Jennifer Westrich, and Vikki Kociela for assistance with data collection; and Carol Muir for article preparation.
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Supported by grant BRITTO98AO from the Cystic Fibrosis Foundation.
Presented in part at the 1999 North American CF Conference, Seattle, WA, October 9, 1999; and Pediatric Academic Societies and American Academy of Pediatrics Joint Meeting, Boston, MA, May 12–15, 2000.