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Common content between quality of life questionnaires for children with cystic fibrosis and the International Classification of Functionality, Disability and Health

Danielle Cristina Gomes, Egmar Longo, Olaf Kraus de Camargo, Diego de Sousa Dantas, Haryelle Náryma Confessor Ferreira, Isabelly Cristina Rodrigues Regalado, Luciana Castaneda Ribeiro, Silvana Alves Pereira
Postgraduate Program in Rehabilitation Sciences, Faculty of Health Sciences of Trairi, Federal University of Rio Grande do, FACISA/UFRN, Santa Cruz, Brasil.
DOI: 10.2340/16501977-2571

Preview of fully accepted paper, still not published in any volume

Abstract

Objective: To identify the most common quality of life instruments for children with cystic fibrosis and link the content with the International Classification of Functioning, Disability and Health (ICF).
Methods: The study was conducted in 2 stages. The first stage involved a review of the literature to select quality of life questionnaires. In the second stage 2 independent reviewers identified questionnaire items and categories corresponding to the ICF, according to approved methodology. The degree of agreement was calculated using the kappa coefficient.
Results: Two questionnaires were selected: the Cystic Fibrosis Questionnaire and DISABKIDS®. A total of 130 concepts were identified from the 112 items. Forty-seven different ICF categories were linked (k>0.62 for all questionnaires), 21 (44.7%) were related to the “body function” domain, 20 (42.6%) to “activity and participation” and 6 (12.8%) to “environmental factors”. Thirteen items (10%) could not be linked because they represent personal factors or are not covered by the ICF.
Conclusion: Body functions were the category most linked to the ICF. Environmental factors were poorly described, and no items were related to body structures in any of the instruments.

Lay Abstract

Cystic fibrosis imposes a heavy treatment burden on the quality of life and psychological well-being of children. Since much of the daily management of cystic fibrosis occurs at home, observing the child’s ability to participate in school-based and leisure activities is of paramount importance, as participation in these activities is considered essential for child development, in addition to contributing to health-related quality of life. This study identified the quality of life questionnaires for cystic fibrosis and linked their items to the International Classification of Functioning, Disability and Health (ICF). In the 2 questionnaires presented here, the categories primarily represented body functions and, al-though environmental factors play an important role in children’s participation in home, school and community activities, and can act as a support or barrier, they were the categories least covered by the 2 questionnaires and no items were related to body structures in any of the instruments.

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