Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis
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. Fifty-nine patients (mean age: 14.03 ± 4.81 years) from 5 Hungarian CF centres completed...
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| Veröffentlicht in: | Italian journal of pediatrics 2014-06, Vol.40 (1), p.50-50, Article 50 |
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| creator | Bodnar, Reka Kadar, Laszlo Holics, Klara Ujhelyi, Rita Kovacs, Lajos Bolbas, Katalin Szekely, Gyongyi Gyurkovits, Kalman Solyom, Eniko Meszaros, Agnes |
| description | 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.
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.
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 (25th BMI pc) (p < 0.01). A strong child-parent agreement was found in the Physical functioning domain (r = 0.77, p < 0.01).
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. |
| doi_str_mv | 10.1186/1824-7288-40-50 |
| format | Article |
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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.
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 (<25th 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).
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.]]></description><identifier>ISSN: 1824-7288</identifier><identifier>ISSN: 1720-8424</identifier><identifier>EISSN: 1824-7288</identifier><identifier>DOI: 10.1186/1824-7288-40-50</identifier><identifier>PMID: 24887479</identifier><language>eng</language><publisher>England: BioMed Central</publisher><subject>Adolescent ; Adult ; Body Mass Index ; Child ; Children & youth ; Cross-Sectional Studies ; Cystic fibrosis ; Cystic Fibrosis - diagnosis ; Cystic Fibrosis - psychology ; Female ; Follow-Up Studies ; Forced Expiratory Volume ; Health Status ; Health Status Indicators ; Hospitalization - statistics & numerical data ; Humans ; Male ; Nutritional Status ; Prospective Studies ; Quality of Life ; Severity of Illness Index ; Spirometry ; Studies ; Surveys and Questionnaires ; Young Adult</subject><ispartof>Italian journal of pediatrics, 2014-06, Vol.40 (1), p.50-50, Article 50</ispartof><rights>2014 Bodnar et al.; licensee BioMed Central Ltd. 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.</rights><rights>Copyright © 2014 Bodnar et al.; licensee BioMed Central Ltd. 2014 Bodnar et al.; licensee BioMed Central Ltd.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c558t-69a6c60d87cb549bc274f9a8805691e2f2190a41af86605569781293db82f31c3</citedby><cites>FETCH-LOGICAL-c558t-69a6c60d87cb549bc274f9a8805691e2f2190a41af86605569781293db82f31c3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4068701/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4068701/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,27901,27902,53766,53768</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24887479$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Bodnar, Reka</creatorcontrib><creatorcontrib>Kadar, Laszlo</creatorcontrib><creatorcontrib>Holics, Klara</creatorcontrib><creatorcontrib>Ujhelyi, Rita</creatorcontrib><creatorcontrib>Kovacs, Lajos</creatorcontrib><creatorcontrib>Bolbas, Katalin</creatorcontrib><creatorcontrib>Szekely, Gyongyi</creatorcontrib><creatorcontrib>Gyurkovits, Kalman</creatorcontrib><creatorcontrib>Solyom, Eniko</creatorcontrib><creatorcontrib>Meszaros, Agnes</creatorcontrib><title>Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis</title><title>Italian journal of pediatrics</title><addtitle>Ital J Pediatr</addtitle><description><![CDATA[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.
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.
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 (<25th 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).
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.]]></description><subject>Adolescent</subject><subject>Adult</subject><subject>Body Mass Index</subject><subject>Child</subject><subject>Children & youth</subject><subject>Cross-Sectional Studies</subject><subject>Cystic fibrosis</subject><subject>Cystic Fibrosis - diagnosis</subject><subject>Cystic Fibrosis - psychology</subject><subject>Female</subject><subject>Follow-Up Studies</subject><subject>Forced Expiratory Volume</subject><subject>Health Status</subject><subject>Health Status Indicators</subject><subject>Hospitalization - statistics & numerical data</subject><subject>Humans</subject><subject>Male</subject><subject>Nutritional Status</subject><subject>Prospective Studies</subject><subject>Quality of Life</subject><subject>Severity of Illness Index</subject><subject>Spirometry</subject><subject>Studies</subject><subject>Surveys and Questionnaires</subject><subject>Young Adult</subject><issn>1824-7288</issn><issn>1720-8424</issn><issn>1824-7288</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><recordid>eNpdkctrXCEUxqWkNI923V0QsunmNur1uQmU0CSFQDftWrxenTE4mqg3Zf77OnkMaVcevvPz45zzAfAZo68YS36OJaGDIFIOFA0MvQNHe-XgTX0Ijmu9Q2gkjOMP4JBQKQUV6gi0K2NbLhWG5OPikg1pBR8WE0PbwuxhDN5Bk2Y4h-pMdbC6R1d2zZDgzZJWpgSToF2HOBeXntBt7jo08xJbhX9CW0O7rS1Y6MNUcg31I3jvTazu08t7An5fff91eTPc_rz-cfntdrCMyTZwZbjlaJbCToyqyRJBvTJSIsYVdsQTrJCh2HjJOWJdFBITNc6TJH7EdjwBF8--98u0cbN1qRUT9X0JG1O2Opug_-2ksNar_Kgp4lIg3A2-vBiU_LC42vQmVOtiNMnlpWrMKBJIUSU7evYfepeXkvp6nRqVEkxx2qnzZ8r2Q9Ti_H4YjPQuUb3LTO8y60NohvqP07c77PnXCMe_HjOdMg</recordid><startdate>20140602</startdate><enddate>20140602</enddate><creator>Bodnar, Reka</creator><creator>Kadar, Laszlo</creator><creator>Holics, Klara</creator><creator>Ujhelyi, Rita</creator><creator>Kovacs, Lajos</creator><creator>Bolbas, Katalin</creator><creator>Szekely, Gyongyi</creator><creator>Gyurkovits, Kalman</creator><creator>Solyom, Eniko</creator><creator>Meszaros, Agnes</creator><general>BioMed Central</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7TK</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>K9.</scope><scope>M0S</scope><scope>M1P</scope><scope>PHGZM</scope><scope>PHGZT</scope><scope>PIMPY</scope><scope>PJZUB</scope><scope>PKEHL</scope><scope>PPXIY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20140602</creationdate><title>Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis</title><author>Bodnar, Reka ; Kadar, Laszlo ; Holics, Klara ; Ujhelyi, Rita ; Kovacs, Lajos ; Bolbas, Katalin ; Szekely, Gyongyi ; Gyurkovits, Kalman ; Solyom, Eniko ; Meszaros, Agnes</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c558t-69a6c60d87cb549bc274f9a8805691e2f2190a41af86605569781293db82f31c3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Body Mass Index</topic><topic>Child</topic><topic>Children & youth</topic><topic>Cross-Sectional Studies</topic><topic>Cystic fibrosis</topic><topic>Cystic Fibrosis - diagnosis</topic><topic>Cystic Fibrosis - psychology</topic><topic>Female</topic><topic>Follow-Up Studies</topic><topic>Forced Expiratory Volume</topic><topic>Health Status</topic><topic>Health Status Indicators</topic><topic>Hospitalization - statistics & numerical data</topic><topic>Humans</topic><topic>Male</topic><topic>Nutritional Status</topic><topic>Prospective Studies</topic><topic>Quality of Life</topic><topic>Severity of Illness Index</topic><topic>Spirometry</topic><topic>Studies</topic><topic>Surveys and Questionnaires</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Bodnar, Reka</creatorcontrib><creatorcontrib>Kadar, Laszlo</creatorcontrib><creatorcontrib>Holics, Klara</creatorcontrib><creatorcontrib>Ujhelyi, Rita</creatorcontrib><creatorcontrib>Kovacs, Lajos</creatorcontrib><creatorcontrib>Bolbas, Katalin</creatorcontrib><creatorcontrib>Szekely, Gyongyi</creatorcontrib><creatorcontrib>Gyurkovits, Kalman</creatorcontrib><creatorcontrib>Solyom, Eniko</creatorcontrib><creatorcontrib>Meszaros, Agnes</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Neurosciences Abstracts</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest Central (New)</collection><collection>ProQuest One Academic (New)</collection><collection>Publicly Available Content Database</collection><collection>ProQuest Health & Medical Research Collection</collection><collection>ProQuest One Academic Middle East (New)</collection><collection>ProQuest One Health & Nursing</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Italian journal of pediatrics</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Bodnar, Reka</au><au>Kadar, Laszlo</au><au>Holics, Klara</au><au>Ujhelyi, Rita</au><au>Kovacs, Lajos</au><au>Bolbas, Katalin</au><au>Szekely, Gyongyi</au><au>Gyurkovits, Kalman</au><au>Solyom, Eniko</au><au>Meszaros, Agnes</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis</atitle><jtitle>Italian journal of pediatrics</jtitle><addtitle>Ital J Pediatr</addtitle><date>2014-06-02</date><risdate>2014</risdate><volume>40</volume><issue>1</issue><spage>50</spage><epage>50</epage><pages>50-50</pages><artnum>50</artnum><issn>1824-7288</issn><issn>1720-8424</issn><eissn>1824-7288</eissn><abstract><![CDATA[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.
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.
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 (<25th 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).
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.]]></abstract><cop>England</cop><pub>BioMed Central</pub><pmid>24887479</pmid><doi>10.1186/1824-7288-40-50</doi><tpages>1</tpages><oa>free_for_read</oa></addata></record> |
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| source | MEDLINE; Springer Nature - Complete Springer Journals; DOAJ Directory of Open Access Journals; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; PubMed Central; PubMed Central Open Access; Springer Nature OA Free Journals |
| subjects | Adolescent Adult Body Mass Index Child Children & youth Cross-Sectional Studies Cystic fibrosis Cystic Fibrosis - diagnosis Cystic Fibrosis - psychology Female Follow-Up Studies Forced Expiratory Volume Health Status Health Status Indicators Hospitalization - statistics & numerical data Humans Male Nutritional Status Prospective Studies Quality of Life Severity of Illness Index Spirometry Studies Surveys and Questionnaires Young Adult |
| title | Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis |
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