Comparison of health-related quality of life among children with cystic fibrosis and their parents in two Eastern European countries

Borawska-Kowalczyk, U.; Bodnar, Reka; Mészáros, Ágnes; Sands, Dorota

doi:10.1016/j.jcf.2015.03.008

Cited by 10 publications

(16 citation statements)

References 23 publications

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“…In this study, school attendance of the patients was found as an important factor affecting several fields of the QoL. Borawska-Kowalczyk et al found the same results in their study (21). CF children have many absences from school due to frequent visits to the CF center, hospitalizations or parental refuse because of complications like sleepless nights due to cough or abdominal pain or protection against many infections among peers at school.…”

Section: Discussionsupporting

confidence: 68%

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Is FEV1 associated with quality of life in children with cystic fibrosis? An original article

et al. 2019

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Introduction: Cystic fibrosis (CF) is a serious genetic life-shortening disease. Quality of life (QoL) measurement related to CF children is a relatively new field of research, which includes the patient’s perspective in research and clinical practice. Objectives: This study aimed to evaluate the QoL in children with CF and its association with FEV1 (forced expiratory volume in 1 second). Patients and Methods: This cross-sectional study was carried out on 7-14 years old children with CF attending children’s medical center from March 2017 to March 2018. Throat swab cultures and spirometry evaluation was performed for all patients. FEV1 was determined and the 6-min walk test (6MWT) was conducted. The patient’s psychological status was assessed using the Persian version of pediatric QoL inventory. ANOVA, t test, and chisquare tests were used for data analysis. Results: Seventy-six subjects with the mean age of 10.49±3.18 years were studied since 59% of them (n=44) were boys. The mean total QoL was 65.34±17.73. Patients with lower pulmonary function had a lower QoL. There was a significant association between FEV1 and school and emotional functioning (P=0.005 and P=0.002, respectively). A significant association was found between SPO2 (peripheral capillary oxygen saturation) reduction after 6MWT and FEV1 decline (P=0.001). Additionally, a significant association was detected between FEV1 and the distance walked during 6MWT (P=0.030). Conclusion: Regarding the association between pulmonary function and QoL in CF patients and lower QoL score in our study, the importance of assessing pulmonary function in these patients should not be neglected.

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Section: Discussionsupporting

confidence: 68%

“…The predicted FEV1 estimates were significantly associated with emotion and school functioning domains. Borawska-Kowalczyk et al identified a significant correlation between QoL and disease severity (21). No correlation was found between the change in Healthrelated QoL (HRQoL) and FEV1 change in the study by van Horck et al (20).…”

Section: Discussionmentioning

confidence: 94%

Is FEV1 associated with quality of life in children with cystic fibrosis? An original article

et al. 2019

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“…Além do tempo, os aspectos econômicos familiares e o sistema de saúde pelo qual é realizado o tratamento influenciam a QV (BORAWSKA-KOWALCZYK;SANDS, 2015;CHEVREUL et al, 2015). Estes aspectos foram confirmados no estudo de Borawska-Kowalczyk e Sands (2015) que encontraram sobrecarga maior dos pais e das crianças polonesas quando comparadas com as húngaras, fato explicado pelo melhor e maior suporte financeiro neste último país.…”

Section: Discussionunclassified

Qualidade de vida de crianças/adolescentes com fibrose cística segundo a percepção de seus pais/cuidadores

Silva

Fernandes

Venâncio

et al. 2019

R. bras. Qual. Vida

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OBJETIVO: Avaliar a qualidade de vida (QV) de crianças/adolescentes com fibrose cística (FC), segundo a percepção dos pais/cuidadores.MÉTODOS: Estudo do tipo observacional transversal de caráter quantitativo, realizado na Associação de Pais e Amigos dos Excepcionais (APAE) com pais/cuidadores de crianças/adolescentes com FC. Participaram 29 pais/cuidadores, com idade entre 21-59 anos, de ambos os sexos. Foi respondido a versão Proxy do questionário DISABKIDS – Módulo Fibrose cística para pais/cuidadores, que avalia a QV das crianças segundo a percepção deles. Para verificar a correlação entre AS variáveis sociodemográficas e a QV foi utilizado a coeficiente de correlação de Spearman.RESULTADOS: No domínio impacto, 17 (58,5%) pais/cuidadores percebem que suas crianças, em algum momento, sentiram-se cansadas com a prática de esportes e 13 (44,8%) sentem falta de ar. No domínio tratamento da doença, 13 (44,8%) pais/cuidadores relataram que os filhos se sentem incomodados com o tempo gasto no tratamento; o mesmo número de pais/cuidadores relataram em algum momento percebem seus filhos incomodados em relação ao tratamento fisioterapêutico. Houve correlação negativa e significativa do impacto da doença com a idade das crianças/adolescentes (r=-0,52, p=0,004) e com o número de filhos (r=-0,55, p=0,002).CONCLUSÕES: Os pais/cuidadores perceberam que os aspectos físicos relacionados ao esporte e à dispneia são os fatores do impacto da doença que mais prejudicam seus filhos. Além disso, os maiores incômodos, segundo os pais/cuidadores, estão no tempo gasto com o tratamento clínico e com a fisioterapia. Foi mostrado que quanto mais nova a criança menor o impacto na QV e que quanto maior o número de filhos pior é a QV no que diz respeito ao impacto da doença.

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“…In children and adolescents with CF, hopelessness about future, stigmatization perception, and school absenteeism have been related to an impaired quality of life. 8,19,20 In these CF patients whose life expectancy has been prolonged, determining psychosocial factors affecting quality of life may bring about psychosocial interventions. As to the best of our knowledge, this study is the first to examine the relationship between psychiatric disorders diagnosed by a structured psychiatric interview and QOL in children and adolescents with CF.…”

Section: Cystic Fibrosis (Cf) Is a Genetic Disorder With Autosomal Rementioning

confidence: 99%

Psychiatric morbidity and quality of life in children and adolescents with cystic fibrosis

et al. 2018

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Şenses-Dinç G, Özçelik U, Çak T, Doğru-Ersöz D, Çöp E, Yalçın E, Çengel-Kültür E, Pekcan S, Kiper N, Ünal F. Psychiatric morbidity and quality of life in children and adolescents with cystic fibrosis. Turk J Pediatr 2018; 60: 32-40. The aim of this study was to investigate psychiatric disorders, depression and anxiety levels, and quality of life in children and adolescents with cystic fibrosis (CF), and to compare them with those of children with non-cystic fibrosis (non-CF) bronchiectasis and healthy controls. A total of 103 children and adolescents aged 7-16 years (35 CF, 28 non-CF bronchiectasis, 40 healthy) were evaluated using The Schedule for Affective Disorders and Schizophrenia for School Aged Children (K-SADS), The Child Depression Inventory (CDI), The State-Trait Anxiety Inventories for Children (STAI-C) and the Pediatric Quality of Life Inventory (PedsQL)-C. The three groups were not statistically different with respect to age, sex, and familial sociodemographic variables. 80% of the children and adolescents in the CF group were diagnosed with a psychiatric disorder, which was significantly more compared to those of the two other groups. The CF group had significantly greater rates of depressive and oppositional defiant disorder and the non-bronchiectasis group had a significantly greater rate of anxiety disorder than the control group. The depression and anxiety symptom levels were significantly greater and the quality of life levels significantly lower in both the CF and non-CF bronchiectasis groups than the healthy controls. In the CF group, the presence of any associated psychiatric disorder led to significantly lower total and psychosocial quality of life scores. In conclusion, CF is associated with poorer QOL in childhood. In order to improve quality of life in CF, the psychiatric conditions of children and adolescents should also be evaluated and their follow-up and treatment should involve a multidisciplinary team approach.

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Comparison of health-related quality of life among children with cystic fibrosis and their parents in two Eastern European countries

Abstract: Observed differences in evaluation of HRQOL may be caused by different therapeutic and diagnostic challenges between countries. To identify possible presence of psychosocial problems, monitoring of HRQOL is recommended.

Cited by 10 publications

References 23 publications

Is FEV1 associated with quality of life in children with cystic fibrosis? An original article

Is FEV1 associated with quality of life in children with cystic fibrosis? An original article

Qualidade de vida de crianças/adolescentes com fibrose cística segundo a percepção de seus pais/cuidadores

Psychiatric morbidity and quality of life in children and adolescents with cystic fibrosis

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