Journal of Rehabilitation Medicine 51-8 | Page 46
J Rehabil Med 2019; 51: 582–586
ORIGINAL REPORT
COMMON CONTENT BETWEEN QUALITY OF LIFE QUESTIONNAIRES FOR
CHILDREN WITH CYSTIC FIBROSIS AND THE INTERNATIONAL CLASSIFICATION
OF FUNCTIONING, DISABILITY AND HEALTH
Danielle Cristina GOMES, MSc 1 , Egmar LONGO, PT, MSc, PhD 1 , Olaf Kraus de CAMARGO, MD, MSc, FRCPC 2 , Diego de
Sousa DANTAS, PT, MSc, PhD 1 , Haryelle Náryma Confessor FERREIRA, MSc 1 , Isabelly Cristina Rodrigues REGALADO,
MSc 3 , Luciana Castaneda RIBEIRO, PT, MSc, PhD 4 and Silvana Alves PEREIRA, PT, MSc, PhD 1,3
From the 1 Postgraduate Program in Rehabilitation Sciences, Faculty of Health Sciences of Trairi, Federal University of Rio Grande do,
FACISA/UFRN, Santa Cruz, 2 Department of Pediatrics, McMaster University, CanChild Centre for Childhood Disability Research, Hamilton,
3
Physiotherapy, Federal University of Rio Grande do Norte – UFRN, Natal, and 4 Federal Institute of Education, Science and Technology,
Rio de Janeiro, Brazil
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 Cys-
tic 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 re-
lated to the “body function” domain, 20 (42.6%) to
“activity and participation” and 6 (12.8%) to “envi-
ronmental 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 struc-
tures in any of the instruments.
Key words: cystic fibrosis; child; quality of life; International
Classification of Functioning, Disability and Health.
Accepted May 23, 2019; Epub ahead of print Jun 10, 2019
J Rehabil Med 2019; 51: 582–586
Correspondence address: Silvana Alves Pereira, Department of Phy-
siotherapy, Federal University of Rio Grande do Norte, BR 101, Natal,
RN, Brazil. E-mail: [email protected]
C
ystic fibrosis (CF), a chronic progressive condition
that involves several systems, leads to numerous
clinical manifestations, the most common being pan-
creatic insufficiency and pulmonary alterations with
chronic airway infection. These alterations impose
a heavy treatment burden on the quality of life and
psychological well-being of individuals with CF (1–3).
In recent years, several instruments have been devel-
oped to evaluate health-related quality of life (HRQoL)
(3–6). The HRQoL indicator provides information on
the impact of a disease and its treatment in different
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 oc-
curs at home, observing the child’s ability to participate
in school-based and leisure activities is of paramount im-
portance, as participation in these activities is considered
essential for child development, in addition to contribu-
ting 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 ques-
tionnaires presented here, the categories primarily re-
presented 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 cove-
red by the 2 questionnaires and no items were related to
body structures in any of the instruments.
life situations, which are measured by specific or ge-
neric questionnaires aimed at assessing the individual
in terms of physical, emotional and social impacts.
However, these instruments may focus differently on
the components of functionality and health, and analys-
ing their scope could result in better clinical practice
applications (7, 8).
In recent years, numerous studies on the breadth of
HRQoL instruments have proposed using the Inter-
national Classification of Functioning Disability and
Health (ICF) to provide relevant information on how
they can be used in the assessment, planning and care
of children with CF (7–10). This is because the ICF
is used to monitor the functionality of individuals and
populations on a broader scale in order to consider
the health and biopsychosocial aspects involved in
the health-disease process. It includes a number of
categories describing aspects of human functionality
that interfere with daily activities, as well as environ-
mental factors that may be facilitators or barriers (9).
The common content between ICF and generic in-
struments that evaluate HRQoL in children has already
been identified (7, 8), but the points of convergence and/
or divergence between questionnaires in order to assess
This is an open access article under the CC BY-NC license. www.medicaljournals.se/jrm
doi: 10.2340/16501977-2571
Journal Compilation © 2019 Foundation of Rehabilitation Information. ISSN 1650-1977