A number of factors influence the health-related quality of life of patients with cystic fibrosis. A new study in the Italian Journal of Pediatrics written by a collaboration of researchers in Hungary evaluated the effects of certain psychological, social, and physiological factors on 59 adolescents from five cystic fibrosis treatment centers.
While the life expectancy for cystic fibrosis patients has increased over the last few decades as a result of new treatments, impacts on the quality of life has been considered secondary to the effectiveness of treatments. Now, more focus has been placed on improving quality of life in addition to extending quality of life.
In the group’s study, questionnaires were distributed to the cystic fibrosis children and their parents to meet two goals. First, the group was interested in the relationships among demographic variables, disease severity, pulmonary variables, nutritional status, and health-related quality of life. Second, they wanted to asses the degree to which children and their parents agree on the status of the children’s quality of life, since sometimes children hide health concerns and parents can be unaware of problems.
Of the variables assessed, passive smoking and parental education and chronic disease had no effect on the children’s quality of life. In contrast, low body mass index or malnutrition, hospitalization, and Pseudomonas aeruginosa infection were associated with a lower health-related quality of life. There was strong agreement between children and parents when scoring symptoms and behaviors.
The researchers also compared their collected data to United States normative data, but only for the parent responses. There were no relevant differences detected, except for the digestive symptoms reported. The team attributed this difference to poorer nutritional status in Hungary and the better use of pancreatic enzyme replacement therapies used clinically in the United States. These results may be useful in enhancing considerations for treatment strategies for Hungarian adolescents with cystic fibrosis.
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