Health-related quality of life (HRQOL) assessment has emerged as a vital health outcome measure in clinical trials, healthcare services and evaluation, and population health outcomes research. Reliability, validity, and parent-child agreement of the PedsQL™ 4.0 Generic Core Scales were examined using child self-report and parent proxy-report age subgroup data on over 8,000 children ages 5-16 years from the PedsQL 4.0 Generic Core Scales DatabaseSM. The PedsQL™ 4.0 Generic Core Scales demonstrated good internal consistency reliability for children as young as 5 years; healthy children across the age subgroups demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition. Confirmatory factor analysis demonstrated that a 5-factor model fit almost identically across the age subgroups, providing further evidence that children as young as 5 years are reliable and valid self-reporters of their HRQOL. Parent-child agreement was in the moderate-to-good range, with parents reporting significantly higher PedsQL™ 4.0 scores across the age subgroups. In conclusion, the analyses support the reliability and validity of child self-report in children as young as 5 years old.

No description available.

Diplomová práce Hodnocení motorických dovedností dětí s OI Abstract The thesis deals with the assessment of motor skills and quality of life in children with osteogenesis imperfecta. The theoretical part summarizes aetiopathogenesis, clinical features, kinesiological abnormalities and the treatment strategies. A particular part describes therapeutic interventions during the various stages of childhood with an alignment to multidisciplinary cooperation. Furthermore, tests of motor skills and quality of life are presented. The practical part assesses the applicability of the BOT-2 for the evaluation of motor skills and PedsQL for the evaluation of the quality of life in children with OI. Moreover, the BOT-2 standardized test score evaluates and compares motor skills and quality of life in children with osteogenesis imperfecta to their peers. Contemporaneously, it investigates the effect of motor skills on the quality of life in children with OI. Based on the results the thesis confirms the hypothesis - worsened both gross motor skills and fine motor skills and the dependency of quality of life on the level of motor skills. The discussion part deals with the feasibility of BOT-2 and PedsQL for the assessment of children with OI, it comments the main limitations of children with OI, and based on up-to-date...

Objetivo: Avaliar a qualidade de vida (QV) nos pacientes com bronquiolite obliterante pós-infecciosa (BOPI) comparando os escores de qualidade de vida com os de crianças hígidas. Verificar as associações entre os escores de qualidade de vida e os dados de função pulmonar de crianças com BOPI. Descrever as características sociodemográficas e clínicas das crianças envolvidas no estudo. Avaliar as propriedades psicométricas do questionário através da confiabilidade e validade. Metodologia: Após o cumprimento das exigências éticas, os dados sobre qualidade de vida foram obtidos através do questionário genérico Pediatric Quality of Life (PedsQL) 4.0. Aplicou-se o questionário em duas ocasiões, em 31 crianças com BOPI e em 80 crianças hígidas, de 8-17 anos, de ambos os sexos. Os dados foram submetidos ao teste t de Student e correlação linear de Pearson. As propriedades psicométricas do questionário foram avaliadas pela diferença mínima importante, pelo α de Cronbach e Correlação Intraclasse. Resultados: A idade média das crianças com BOPI foi de 11,2 ± 2,6 anos, 67,7% meninos, a média de anos de estudos foi 4,3 ± 2,2, apresentavam-se eutróficas 77,4% e a média do VEF1 na espirometria foi de 45%. Com relação a qualidade de vida houve diferença na média total dos escores e nos respectivos domínios entre os grupos, mas não foram diferenças estatisticamente significativas. Quanto as propriedades psicométricas do questionário, o α de Cronbach foi ≥ 0,7 no escore total e nos domínios físico, psicossocial e social nas crianças com BOPI e apenas no psicossocial nas crianças hígidas. A reprodutibilidade do questionário foi ≥ 0,7 no global e em todos os domínios, para ambos os grupos. Conclusões: Não houve diferenças na QV das crianças com BOPI em relação às hígidas. Na sua condição de questionário genérico, o PedsQL4.0 demonstrou-se confiável e, portanto, utilizável como elemento complementar no acompanhamento da saúde dessas crianças. / Objective: It aims at evaluating the quality of life in patients with postinfectious bronchiolitis obliterans (PBO) comparing their quality of life scores to the ones of healthy children. Also, at verifying the associations between the quality of life scores and the lung functioning data of PBO children. It also has the objective of describing the socio-demographic and clinical characteristics of children who were involved in the study. It aims at evaluating the psychometrical properties of the questionnaire by its reliability and validity. Methodology: After the accomplishment of ethical demands, the data about quality of life were obtained by means of the Pediatric Quality of Life (PedsQL) 4.0 generic questionnaire. It was applied in two occasions, to 31 PBO children and 80 healthy ones, between 8 and 17 years of age, of both genders. The data were submitted to the Student’s t-test and Pearson’s linear correlation. The psychometric properties of the questionnaire were assessed by the minimum important difference, by Cronbach’s α and the intraclass correlation. Results: The average age of PBO children was 11.2 ± 2.2, 67.7% were boys, with an average of 4.3 ± 2.2 years of studies, 77.4% were eutrophic and with an average of 45% of FEV1 in spirometry. In relation to the quality of life, there was a difference in the total average of scores and in the respective domains between the groups, but they were not statistically meaningful differences. Concerning the psychometric properties of the questionnaire, Cronbach’s α was ≥ 0.7 in the total score and in the physical, psychosocial and social domains of children with PBO and only in the psychosocial one in the healthy children. The reproductibility of the questionnaire was globally ≥ 0.7 and in all domains for both groups. Conclusions: There were no differences in quality of life of PBO children in relation to the healthy ones. In its condition of generic questionnaire, PedsQL 4.0 showed to be reliable and therefore applicable as a complementary element in the follow-up of these children’s health.

Objetivo: Avaliar a qualidade de vida (QV) nos pacientes com bronquiolite obliterante pós-infecciosa (BOPI) comparando os escores de qualidade de vida com os de crianças hígidas. Verificar as associações entre os escores de qualidade de vida e os dados de função pulmonar de crianças com BOPI. Descrever as características sociodemográficas e clínicas das crianças envolvidas no estudo. Avaliar as propriedades psicométricas do questionário através da confiabilidade e validade. Metodologia: Após o cumprimento das exigências éticas, os dados sobre qualidade de vida foram obtidos através do questionário genérico Pediatric Quality of Life (PedsQL) 4.0. Aplicou-se o questionário em duas ocasiões, em 31 crianças com BOPI e em 80 crianças hígidas, de 8-17 anos, de ambos os sexos. Os dados foram submetidos ao teste t de Student e correlação linear de Pearson. As propriedades psicométricas do questionário foram avaliadas pela diferença mínima importante, pelo α de Cronbach e Correlação Intraclasse. Resultados: A idade média das crianças com BOPI foi de 11,2 ± 2,6 anos, 67,7% meninos, a média de anos de estudos foi 4,3 ± 2,2, apresentavam-se eutróficas 77,4% e a média do VEF1 na espirometria foi de 45%. Com relação a qualidade de vida houve diferença na média total dos escores e nos respectivos domínios entre os grupos, mas não foram diferenças estatisticamente significativas. Quanto as propriedades psicométricas do questionário, o α de Cronbach foi ≥ 0,7 no escore total e nos domínios físico, psicossocial e social nas crianças com BOPI e apenas no psicossocial nas crianças hígidas. A reprodutibilidade do questionário foi ≥ 0,7 no global e em todos os domínios, para ambos os grupos. Conclusões: Não houve diferenças na QV das crianças com BOPI em relação às hígidas. Na sua condição de questionário genérico, o PedsQL4.0 demonstrou-se confiável e, portanto, utilizável como elemento complementar no acompanhamento da saúde dessas crianças. / Objective: It aims at evaluating the quality of life in patients with postinfectious bronchiolitis obliterans (PBO) comparing their quality of life scores to the ones of healthy children. Also, at verifying the associations between the quality of life scores and the lung functioning data of PBO children. It also has the objective of describing the socio-demographic and clinical characteristics of children who were involved in the study. It aims at evaluating the psychometrical properties of the questionnaire by its reliability and validity. Methodology: After the accomplishment of ethical demands, the data about quality of life were obtained by means of the Pediatric Quality of Life (PedsQL) 4.0 generic questionnaire. It was applied in two occasions, to 31 PBO children and 80 healthy ones, between 8 and 17 years of age, of both genders. The data were submitted to the Student’s t-test and Pearson’s linear correlation. The psychometric properties of the questionnaire were assessed by the minimum important difference, by Cronbach’s α and the intraclass correlation. Results: The average age of PBO children was 11.2 ± 2.2, 67.7% were boys, with an average of 4.3 ± 2.2 years of studies, 77.4% were eutrophic and with an average of 45% of FEV1 in spirometry. In relation to the quality of life, there was a difference in the total average of scores and in the respective domains between the groups, but they were not statistically meaningful differences. Concerning the psychometric properties of the questionnaire, Cronbach’s α was ≥ 0.7 in the total score and in the physical, psychosocial and social domains of children with PBO and only in the psychosocial one in the healthy children. The reproductibility of the questionnaire was globally ≥ 0.7 and in all domains for both groups. Conclusions: There were no differences in quality of life of PBO children in relation to the healthy ones. In its condition of generic questionnaire, PedsQL 4.0 showed to be reliable and therefore applicable as a complementary element in the follow-up of these children’s health.

Objetivo: Avaliar a qualidade de vida (QV) nos pacientes com bronquiolite obliterante pós-infecciosa (BOPI) comparando os escores de qualidade de vida com os de crianças hígidas. Verificar as associações entre os escores de qualidade de vida e os dados de função pulmonar de crianças com BOPI. Descrever as características sociodemográficas e clínicas das crianças envolvidas no estudo. Avaliar as propriedades psicométricas do questionário através da confiabilidade e validade. Metodologia: Após o cumprimento das exigências éticas, os dados sobre qualidade de vida foram obtidos através do questionário genérico Pediatric Quality of Life (PedsQL) 4.0. Aplicou-se o questionário em duas ocasiões, em 31 crianças com BOPI e em 80 crianças hígidas, de 8-17 anos, de ambos os sexos. Os dados foram submetidos ao teste t de Student e correlação linear de Pearson. As propriedades psicométricas do questionário foram avaliadas pela diferença mínima importante, pelo α de Cronbach e Correlação Intraclasse. Resultados: A idade média das crianças com BOPI foi de 11,2 ± 2,6 anos, 67,7% meninos, a média de anos de estudos foi 4,3 ± 2,2, apresentavam-se eutróficas 77,4% e a média do VEF1 na espirometria foi de 45%. Com relação a qualidade de vida houve diferença na média total dos escores e nos respectivos domínios entre os grupos, mas não foram diferenças estatisticamente significativas. Quanto as propriedades psicométricas do questionário, o α de Cronbach foi ≥ 0,7 no escore total e nos domínios físico, psicossocial e social nas crianças com BOPI e apenas no psicossocial nas crianças hígidas. A reprodutibilidade do questionário foi ≥ 0,7 no global e em todos os domínios, para ambos os grupos. Conclusões: Não houve diferenças na QV das crianças com BOPI em relação às hígidas. Na sua condição de questionário genérico, o PedsQL4.0 demonstrou-se confiável e, portanto, utilizável como elemento complementar no acompanhamento da saúde dessas crianças. / Objective: It aims at evaluating the quality of life in patients with postinfectious bronchiolitis obliterans (PBO) comparing their quality of life scores to the ones of healthy children. Also, at verifying the associations between the quality of life scores and the lung functioning data of PBO children. It also has the objective of describing the socio-demographic and clinical characteristics of children who were involved in the study. It aims at evaluating the psychometrical properties of the questionnaire by its reliability and validity. Methodology: After the accomplishment of ethical demands, the data about quality of life were obtained by means of the Pediatric Quality of Life (PedsQL) 4.0 generic questionnaire. It was applied in two occasions, to 31 PBO children and 80 healthy ones, between 8 and 17 years of age, of both genders. The data were submitted to the Student’s t-test and Pearson’s linear correlation. The psychometric properties of the questionnaire were assessed by the minimum important difference, by Cronbach’s α and the intraclass correlation. Results: The average age of PBO children was 11.2 ± 2.2, 67.7% were boys, with an average of 4.3 ± 2.2 years of studies, 77.4% were eutrophic and with an average of 45% of FEV1 in spirometry. In relation to the quality of life, there was a difference in the total average of scores and in the respective domains between the groups, but they were not statistically meaningful differences. Concerning the psychometric properties of the questionnaire, Cronbach’s α was ≥ 0.7 in the total score and in the physical, psychosocial and social domains of children with PBO and only in the psychosocial one in the healthy children. The reproductibility of the questionnaire was globally ≥ 0.7 and in all domains for both groups. Conclusions: There were no differences in quality of life of PBO children in relation to the healthy ones. In its condition of generic questionnaire, PedsQL 4.0 showed to be reliable and therefore applicable as a complementary element in the follow-up of these children’s health.

No description available.

Introduction: Medical advances have resulted in reduced mortality of pediatric patients with Intestinal Failure. Consequently, more patients go home on parenteral nutrition (PN) for extended durations. This time-consuming and complicated therapy necessitates persistent vigilance in monitoring and response to potential life-threatening side effects. These issues may impact quality of life (QOL) for patients, caregivers and families. Methods: This observational, cross-sectional, mixed-methods analysis of multidimensional QOL used a quantitative battery assessment and a qualitative focus group. Questionnaire results were compared to published norms, published small bowel transplant (SBTx), and institutional SBTx patients. Results: Home PN proxy assessments scored children lower than published norms but similar to SBTx. The child self-reports were similar to both normative and SBTx populations, except lower general and overall health. Generic questionnaires did not capture disease-specific issues. Conclusion: QOL is compromised in children on home PN and caregivers compared to norms but is similar to SBTx.

No description available.

Introduction: Medical advances have resulted in reduced mortality of pediatric patients with Intestinal Failure. Consequently, more patients go home on parenteral nutrition (PN) for extended durations. This time-consuming and complicated therapy necessitates persistent vigilance in monitoring and response to potential life-threatening side effects. These issues may impact quality of life (QOL) for patients, caregivers and families. Methods: This observational, cross-sectional, mixed-methods analysis of multidimensional QOL used a quantitative battery assessment and a qualitative focus group. Questionnaire results were compared to published norms, published small bowel transplant (SBTx), and institutional SBTx patients. Results: Home PN proxy assessments scored children lower than published norms but similar to SBTx. The child self-reports were similar to both normative and SBTx populations, except lower general and overall health. Generic questionnaires did not capture disease-specific issues. Conclusion: QOL is compromised in children on home PN and caregivers compared to norms but is similar to SBTx.