Cargando…

Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis

BACKGROUND: The aim of our study was to evaluate factors affecting cystic fibrosis (CF) patients’ health-related quality of life (HRQoL) and to assess the level of agreement on HRQol between children and their parents. METHODS: Fifty-nine patients (mean age: 14.03 ± 4.81 years) from 5 Hungarian CF c...

Descripción completa

Detalles Bibliográficos
Autores principales: Bodnar, Reka, Kadar, Laszlo, Holics, Klara, Ujhelyi, Rita, Kovacs, Lajos, Bolbas, Katalin, Szekely, Gyongyi, Gyurkovits, Kalman, Solyom, Eniko, Meszaros, Agnes
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4068701/
https://www.ncbi.nlm.nih.gov/pubmed/24887479
http://dx.doi.org/10.1186/1824-7288-40-50
_version_ 1782322442494017536
author Bodnar, Reka
Kadar, Laszlo
Holics, Klara
Ujhelyi, Rita
Kovacs, Lajos
Bolbas, Katalin
Szekely, Gyongyi
Gyurkovits, Kalman
Solyom, Eniko
Meszaros, Agnes
author_facet Bodnar, Reka
Kadar, Laszlo
Holics, Klara
Ujhelyi, Rita
Kovacs, Lajos
Bolbas, Katalin
Szekely, Gyongyi
Gyurkovits, Kalman
Solyom, Eniko
Meszaros, Agnes
author_sort Bodnar, Reka
collection PubMed
description BACKGROUND: The aim of our study was to evaluate factors affecting cystic fibrosis (CF) patients’ health-related quality of life (HRQoL) and to assess the level of agreement on HRQol between children and their parents. METHODS: Fifty-nine patients (mean age: 14.03 ± 4.81 years) from 5 Hungarian CF centres completed the survey. HRQoL was measured using The Cystic Fibrosis Questionnaire-Revised (CFQ-R). Parents were asked to fill out a questionnaire about their smoking habits, educational level and history of chronic illness. Disease severity was assessed using the physician-reported Shwachman-Kulczycki (SK) score system. Spirometry, Body Mass Index (BMI) percentile (pc), hospitalisation and Pseudomonas aeruginosa (PA) infection were examined as physiologic parameters of CF, and the impact of these factors on HRQoL was assessed. A multivariate regression analysis was performed to identify the most important factors affecting HRQoL. The level of significance was set to 0.05. RESULTS: Passive smoking and parental educational level and chronic diseases status did not have a significant impact on the patients’ HRQoL (p > 0.05). Significantly lower SK scores and spirometry values were found in low BMI pc patients (p < 0.001), in hospitalised (p < 0.01) and in PA-infected patients (p < 0.01), than in the adequate-weight, non-hospitalised and PA culture-negative subgroup. Lower CFQ-R scores were detected in hospitalised patients than in non-hospitalised patients in their Physical functioning domain. PA-infected patients had HRQoL scores that were significantly worse in the Body image (p < 0.01) and Respiratory symptoms (p < 0.05) domains than the PA culture-negative patients. Patients with a low BMI pc (<25(th) BMI pc) had significantly lower scores in the Eating, Body image and Treatment burden domains, than the adequate-weight patients (>25(th) BMI pc) (p < 0.01). A strong child–parent agreement was found in the Physical functioning domain (r = 0.77, p < 0.01). CONCLUSIONS: Passive smoking, parental educational level and chronic diseases of parents do not affect the HRQoL of CF patients. In contrast, hospitalisation, PA infection and malnutrition have a significant and negative impact on patients’ HRQoL and the clinical severity of the disease. Parents and children were consistent in their scoring of symptoms and behaviours that were observable.
format Online
Article
Text
id pubmed-4068701
institution National Center for Biotechnology Information
language English
publishDate 2014
publisher BioMed Central
record_format MEDLINE/PubMed
spelling pubmed-40687012014-06-25 Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis Bodnar, Reka Kadar, Laszlo Holics, Klara Ujhelyi, Rita Kovacs, Lajos Bolbas, Katalin Szekely, Gyongyi Gyurkovits, Kalman Solyom, Eniko Meszaros, Agnes Ital J Pediatr Research BACKGROUND: The aim of our study was to evaluate factors affecting cystic fibrosis (CF) patients’ health-related quality of life (HRQoL) and to assess the level of agreement on HRQol between children and their parents. METHODS: Fifty-nine patients (mean age: 14.03 ± 4.81 years) from 5 Hungarian CF centres completed the survey. HRQoL was measured using The Cystic Fibrosis Questionnaire-Revised (CFQ-R). Parents were asked to fill out a questionnaire about their smoking habits, educational level and history of chronic illness. Disease severity was assessed using the physician-reported Shwachman-Kulczycki (SK) score system. Spirometry, Body Mass Index (BMI) percentile (pc), hospitalisation and Pseudomonas aeruginosa (PA) infection were examined as physiologic parameters of CF, and the impact of these factors on HRQoL was assessed. A multivariate regression analysis was performed to identify the most important factors affecting HRQoL. The level of significance was set to 0.05. RESULTS: Passive smoking and parental educational level and chronic diseases status did not have a significant impact on the patients’ HRQoL (p > 0.05). Significantly lower SK scores and spirometry values were found in low BMI pc patients (p < 0.001), in hospitalised (p < 0.01) and in PA-infected patients (p < 0.01), than in the adequate-weight, non-hospitalised and PA culture-negative subgroup. Lower CFQ-R scores were detected in hospitalised patients than in non-hospitalised patients in their Physical functioning domain. PA-infected patients had HRQoL scores that were significantly worse in the Body image (p < 0.01) and Respiratory symptoms (p < 0.05) domains than the PA culture-negative patients. Patients with a low BMI pc (<25(th) BMI pc) had significantly lower scores in the Eating, Body image and Treatment burden domains, than the adequate-weight patients (>25(th) BMI pc) (p < 0.01). A strong child–parent agreement was found in the Physical functioning domain (r = 0.77, p < 0.01). CONCLUSIONS: Passive smoking, parental educational level and chronic diseases of parents do not affect the HRQoL of CF patients. In contrast, hospitalisation, PA infection and malnutrition have a significant and negative impact on patients’ HRQoL and the clinical severity of the disease. Parents and children were consistent in their scoring of symptoms and behaviours that were observable. BioMed Central 2014-06-02 /pmc/articles/PMC4068701/ /pubmed/24887479 http://dx.doi.org/10.1186/1824-7288-40-50 Text en Copyright © 2014 Bodnar et al.; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research
Bodnar, Reka
Kadar, Laszlo
Holics, Klara
Ujhelyi, Rita
Kovacs, Lajos
Bolbas, Katalin
Szekely, Gyongyi
Gyurkovits, Kalman
Solyom, Eniko
Meszaros, Agnes
Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis
title Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis
title_full Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis
title_fullStr Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis
title_full_unstemmed Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis
title_short Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis
title_sort factors influencing quality of life and disease severity in hungarian children and young adults with cystic fibrosis
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4068701/
https://www.ncbi.nlm.nih.gov/pubmed/24887479
http://dx.doi.org/10.1186/1824-7288-40-50
work_keys_str_mv AT bodnarreka factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT kadarlaszlo factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT holicsklara factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT ujhelyirita factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT kovacslajos factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT bolbaskatalin factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT szekelygyongyi factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT gyurkovitskalman factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT solyomeniko factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis
AT meszarosagnes factorsinfluencingqualityoflifeanddiseaseseverityinhungarianchildrenandyoungadultswithcysticfibrosis