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

Reka Bodnar, Laszlo Kadar, Klara Holics, Rita Ujhelyi, Lajos Kovacs, Katalin Bolbas, Gyongyi Szekely, K. Gyurkovits, Eniko Solyom, Agnes Meszaros

Research output: Contribution to journalArticle

14 Citations (Scopus)

Abstract

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 (th BMI pc) had significantly lower scores in the Eating, Body image and Treatment burden domains, than the adequate-weight patients (>25th 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.

Original languageEnglish
Article number50
JournalItalian Journal of Pediatrics
Volume40
Issue number1
DOIs
Publication statusPublished - Jun 2 2014

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Cystic Fibrosis
Young Adult
Quality of Life
Parents
Pseudomonas Infections
Tobacco Smoke Pollution
Body Mass Index
Chronic Disease
Spirometry
Pseudomonas aeruginosa
Hospitalization
Malnutrition
Habits
Multivariate Analysis
Smoking
Regression Analysis
Physicians
Surveys and Questionnaires

Keywords

  • Cystic fibrosis
  • Health-related quality of life
  • Hospitalisation
  • Malnutrition
  • Parent-child agreement
  • Pseudomonas aeruginosa

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

Cite this

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, K.; Solyom, Eniko; Meszaros, Agnes.

In: Italian Journal of Pediatrics, Vol. 40, No. 1, 50, 02.06.2014.

Research output: Contribution to journalArticle

Bodnar, R, Kadar, L, Holics, K, Ujhelyi, R, Kovacs, L, Bolbas, K, Szekely, G, Gyurkovits, K, Solyom, E & Meszaros, A 2014, 'Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis', Italian Journal of Pediatrics, vol. 40, no. 1, 50. https://doi.org/10.1186/1824-7288-40-50
Bodnar, Reka ; Kadar, Laszlo ; Holics, Klara ; Ujhelyi, Rita ; Kovacs, Lajos ; Bolbas, Katalin ; Szekely, Gyongyi ; Gyurkovits, K. ; Solyom, Eniko ; Meszaros, Agnes. / Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis. In: Italian Journal of Pediatrics. 2014 ; Vol. 40, No. 1.
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abstract = "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 (th BMI pc) had significantly lower scores in the Eating, Body image and Treatment burden domains, than the adequate-weight patients (>25th 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.",
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AU - Bodnar, Reka

AU - Kadar, Laszlo

AU - Holics, Klara

AU - Ujhelyi, Rita

AU - Kovacs, Lajos

AU - Bolbas, Katalin

AU - Szekely, Gyongyi

AU - Gyurkovits, K.

AU - Solyom, Eniko

AU - Meszaros, Agnes

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N2 - 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 (th BMI pc) had significantly lower scores in the Eating, Body image and Treatment burden domains, than the adequate-weight patients (>25th 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.

AB - 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 (th BMI pc) had significantly lower scores in the Eating, Body image and Treatment burden domains, than the adequate-weight patients (>25th 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.

KW - Cystic fibrosis

KW - Health-related quality of life

KW - Hospitalisation

KW - Malnutrition

KW - Parent-child agreement

KW - Pseudomonas aeruginosa

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