Health related quality of life of children with rheumatic heart diseases: reliability of the Brazilian version of the pediatric quality of life inventory™ cardiac module scale

Moraes, Anabela do Nascimento; Terreri, Maria Teresa; Hilário, Maria Odete Esteves; Len, Cláudio Arnaldo

doi:10.1186/1477-7525-11-198

Cited by 14 publications

(19 citation statements)

References 31 publications

(62 reference statements)

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“…Cronbach’s alpha coefficients exceeded 0.7 in the total scale and every dimension in both parent proxy reports and child self-reports, indicating good reliability. However, these values were higher than those described in previous reports assessing patients with a wide range of diseases in other countries, with values generally over 0.7 but around 0.6 for some dimensions [ 13 , 16 , 18 , 21 ].…”

Section: Discussioncontrasting

confidence: 78%

Reliability and validity of the Chinese mandarin version of PedsQL™ 3.0 transplant module

Chang

Luo

Zhou

et al. 2016

Health Qual Life Outcomes

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BackgroundLong-term health-related quality of life (HRQoL) of pediatric patients after hematopoietic stem cell transplantation (HSCT) is increasingly studied worldwide. However, few studies have been performed in China, where no uniform scale is available; the PedsQL™ Cancer Module 3.0 Chinese Mandarin version has been used to evaluate HRQoL of patients after HSCT in China. This study aimed to assess the reliability and validity of the Chinese Mandarin version of PedsQL™ 3.0 Transplant Module.MethodsPatients between 2 and 18 years old, who underwent HSCT from January 2006 to June 2014, were recruited in Beijing Children’s Hospital affiliated to Capital Medical University, the First Affiliated Hospital of Southern Medical University and Beijing Daopei Hospital. 207 parent reports and 182 child self-reports of the PedsQL™ 3.0 Transplant Module Chinese Mandarin version were assigned, of which 362 were returned.ResultsNo missing item response was observed in the returned reports. Cronbach’s alpha coefficient exceeded 0.7 in total scale and every dimension. The intraclass correlation coefficient exceeded 0.8 in all dimensions of child self-reports and parent reports. Spearman’s rank correlation coefficients of items and their respective dimensions were 0.6-0.94 in parent reports, and 0.62-0.93 in child self-reports, while a weak association was found between the items and other dimensions. Exploratory factor analysis indicated a good extraction effect, and construct validity of the scale was >60 %.ConclusionsThe Chinese Mandarin version of PedsQL™ 3.0 Transplant Module has good feasibility, reliability and validity. Its use may help improve the HRQoL of children after HSCT in China.

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Section: Discussioncontrasting

confidence: 78%

Reliability and validity of the Chinese mandarin version of PedsQL™ 3.0 transplant module

Chang

Luo

Zhou

et al. 2016

Health Qual Life Outcomes

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“…According to Ferguson and Kovacs, 33 some aspects contribute to a poor quality of life, including low social support, emotional instability, poor health, and low exercise tolerance. Quality of life scores were around 70%, corroborating the findings by Moraes et al, 34 who evaluated the same population profile aiming to validate the heart module of PedsQL for Brazil. Although there are no cutoff points described in the literature, these authors considered that these levels correspond to a lower quality of life, as per the study by Klatchoian et al, 17 who, found a score of 72% for children with chronic rheumatic diseases compared to healthy ones, with scores of 88%, while validating the general PedsQL for Brazil - a significant difference.…”

Section: Discussionsupporting

confidence: 86%

Tolerância Ao Exercício, Função Pulmonar, Força Muscular Respiratória E Qualidade De Vida Em Crianças E Adolescentes Com Cardiopatia Reumática

Melo

Lira

Lima

et al. 2018

Rev. paul. pediatr.

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Objective: Despite the high prevalence of rheumatic heart disease in Brazil, the occurrence of functional impairment in children and adolescents with rheumatic heart disease is not clear. The aim of this study was to evaluate exercise tolerance, respiratory muscle strength, lung function, and quality of life of children and adolescents with rheumatic heart disease. Methods: Cross-sectional study, conducted from August to December 2014 with children and adolescents with rheumatic heart disease aged 8 to 16 years. The participants, after completing the socioeconomic, clinical, and quality of life questionnaires were tested by spirometry, manovacuometry and in a 6-minute walk test. The variables and their reference values were compared using the paired Student’s t-test. Comparisons between predicted and observed walking distance were done also by Student’s t-test, consdiering the categorization of the participants. Correlations between these differences and quantitative variables were assessed by Pearson’s coefficient, being significant p<0.05. Results: All 56 participants had a walked distance lower than predicted (p<0.001). The differences between predicted and observed distances were positively correlated with the baseline heart rate (r=0.3545; p=0.007). Expiratory muscle strength was also lower than the predicted values (p<0,001). Regarding quality of life assessment, the mean scores were 70, 77 and 67% for general, physical, and psychosocial aspects, respectively. Conclusions: Children and adolescents with rheumatic heart disease have reduced exercise tolerance, which is related to their higher baseline heart rate; they also show impaired expiratory strength and quality of life.

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“…In Sao Paulo, Brazil, a Portuguese translation of the Pediatric Quality of Life Inventory core and cardiac module was used to investigate the quality of life of 109 young people with RHD and their parents 241 . Results indicated global impairment of quality of life in physical, emotional, social, school and psychosocial domains.…”

Section: Quality Of Lifementioning

confidence: 99%

Acute rheumatic fever and rheumatic heart disease

Carapetis

Beaton

Cunningham

et al. 2016

Nat Rev Dis Primers

462

486

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Acute rheumatic fever (ARF) is the result of an autoimmune response to pharyngitis caused by infection with group A Streptococcus. The long-term damage to cardiac valves caused by ARF, which can result from a single severe episode or from multiple recurrent episodes of the illness, is known as rheumatic heart disease (RHD) and is a notable cause of morbidity and mortality in resource-poor settings around the world. Although our understanding of disease pathogenesis has advanced in recent years, this has not led to dramatic improvements in diagnostic approaches, which are still reliant on clinical features using the Jones Criteria, or treatment practices. Indeed, penicillin has been the mainstay of treatment for decades and there is no other treatment that has been proven to alter the likelihood or the severity of RHD after an episode of ARF. Recent advances — including the use of echocardiographic diagnosis in those with ARF and in screening for early detection of RHD, progress in developing group A streptococcal vaccines and an increased focus on the lived experience of those with RHD and the need to improve quality of life — give cause for optimism that progress will be made in coming years against this neglected disease that affects populations around the world, but is a particular issue for those living in poverty.

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Health related quality of life of children with rheumatic heart diseases: reliability of the Brazilian version of the pediatric quality of life inventory™ cardiac module scale

Cited by 14 publications

References 31 publications

Reliability and validity of the Chinese mandarin version of PedsQL™ 3.0 transplant module

Reliability and validity of the Chinese mandarin version of PedsQL™ 3.0 transplant module

Tolerância Ao Exercício, Função Pulmonar, Força Muscular Respiratória E Qualidade De Vida Em Crianças E Adolescentes Com Cardiopatia Reumática

Acute rheumatic fever and rheumatic heart disease

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