Comparison of health-related quality of life among children with cystic fibrosis and their parents in two Eastern European countries

Abstract

Background: In the optimal care of cystic fibrosis (CF) patients, not only medical parameters are respected but also health-related quality of life (HRQOL). The aim of our study was to compare HRQOL of CF patients from two Eastern European countries.

Methods: 141 patients with CF (6-18 years) and 102 parents completed the Cystic Fibrosis Questionnaire-Revised (CFQ-R). Data about disease severity, type of children's education and questions about parents' employment status were collected.

Results: In the patient group, a significant difference was found only in Treatment burden, whereas in the parent group, there were significant differences in Treatment burden, Emotional functioning, Eating and Digestive symptoms between the two countries. School attendance was revealed as an important factor influencing HRQOL.

Conclusions: Observed differences in evaluation of HRQOL may be caused by different therapeutic and diagnostic challenges between countries. To identify possible presence of psychosocial problems, monitoring of HRQOL is recommended.

Keywords: Cystic fibrosis; Eastern Europe; Health-related quality of life; Individual education.