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How about your peers? Cystic fibrosis questionnaire data from healthy children and adolescents

DOI: 10.1186/1471-2431-11-86

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Abstract:

The CFQ was completed by 478 healthy Dutch children and adolescents (aged 6-20) in a cross-sectional study.The majority of healthy children (over 65%) did not reach maximum scores on most domains of the CFQ. Median CFQ-scores of healthy children and adolescents ranged from 67 to 100 (on a scale of 0-100) on the different CFQ-domains. Significant differences in quality of life exist among healthy children and adolescents, and these depend on age and gender.Reference data of quality of life scores from a healthy population are essential for adequate interpretation of quality of life in young patients with CF. Clinicians should be aware that the perception of health-related quality of life is not as disease-specific as one might think and also relies on factors such as age, normal maturation and gender.Cystic fibrosis (CF) is the most common autosomal-recessive disease in the white population [1]. CF is, despite advances in care and treatment modalities, still a life threatening disease, involving especially the pulmonary and gastrointestinal organs. CF poses a heavy burden on patients and their families involving daily complex and time-consuming treatments with medication and demands of a healthy life style with sufficient nutrition and exercise [2]. Fortunately, life expectancy of patients with CF has improved dramatically in the recent years due to early diagnosis and better treatment options [3]. With this increasing life expectancy, patients with CF face new issues such as disease self management, development towards personal autonomy and identity, questions concerning intimate relationships and family planning. It is now recognized that traditional measurements of the physiological status (e.g. lung function and body mass index) are inadequate to cover all aspects of the impact of CF on daily life and on the broader issues mentioned above [4]. Within this context, measuring health-related quality of life has received growing attention in clinical care especially

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