RESUMO
OBJECTIVE: To determine health-related quality of life (HRQoL) and neurocognitive impairment in survivors of pediatric acute liver failure (PALF). STUDY DESIGN: A longitudinal prospective study was conducted. At 6 and 12 months after PALF presentation, surveys of HRQoL were completed for 2- to 19-year-olds and executive functioning for ages 2-16 years. At 12 months, patients 3-16 years of age completed neurocognitive testing. HRQoL scores were compared with a healthy, matched sample. Neurocognitive scores were compared with norms; executive functioning scores were examined categorically. RESULTS: A total of 52 parent-report HRQoL surveys were completed at 6 months, 48 at 12 months; 25 patients completed neurocognitive testing. The median age at 6 months was 7.9 years (range 3.5-15.0), and final diagnosis was indeterminate for 46.2% (n = 24). Self and parent-report on Pediatric Quality of Life Inventory Generic and Multidimensional Fatigue scales fell below the healthy sample at 6 months and 12 months (almost all P < .001). Children reported lower mean scores on cognitive fatigue at 12 months (60.91 ± 22.99) compared with 6 months (73.61 ± 27.49, P = .006) . The distribution of Behavior Rating Inventory of Executive Function scores was shifted downward on parent-report (preschool) for all indices at 6 months (n = 14, P ≤ .003); Global Executive Composite and Emergent Metacognition at 12 months (n = 10, P = .03). Visual Motor Integration (VMI-6) Copying (mean = 90.3 ± 13.8, P = .0002) and VMI-6 Motor Coordination (mean = 85.1 ± 15.2 P = .0002) fell below norms, but full scale IQ (Wechsler Scales) and Attention (Conners' Continuous Performance Test) did not. CONCLUSIONS: Survivors of PALF appear to show deficits in motor skills, executive functioning, HRQoL, and evidence for worsening cognitive fatigue from 6 to 12 months following PALF presentation.
Assuntos
Disfunção Cognitiva/diagnóstico , Testes de Inteligência , Falência Hepática Aguda/psicologia , Falência Hepática Aguda/terapia , Destreza Motora , Qualidade de Vida , Adolescente , Atenção , Criança , Pré-Escolar , Cognição , Estudos Transversais , Depressão/complicações , Função Executiva , Fadiga , Feminino , Humanos , Lactente , Recém-Nascido , Estudos Longitudinais , Masculino , Testes de Estado Mental e Demência , Estudos Prospectivos , Transtornos de Estresse Pós-Traumáticos/complicações , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVES: To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation. STUDY DESIGN: A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemographic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated. RESULTS: Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL. CONCLUSIONS: Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors.
Assuntos
Transplante de Células-Tronco Hematopoéticas/psicologia , Doadores de Tecidos/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pais/psicologia , Procurador , Qualidade de Vida/psicologia , Irmãos , Inquéritos e Questionários , Estados UnidosRESUMO
The purpose of this article is to investigate the spectrum of physical function of pediatric liver transplantation (LT) recipients 12-24 months after LT. Review data were collected through the functional outcomes group, an ancillary study of the Studies of Pediatric Liver Transplantation registry. Patients were eligible if they had survived LT by 12-24 months. Children ≥ 8 years and parents completed the Pediatric Quality of Life Inventory™ 4.0 generic core scales, which includes 8 questions assessing physical function. Scores were compared to a matched healthy child population (n = 1658) and between survivors with optimal versus nonoptimal health. A total of 263 patients were included. Median age at transplant and survey was 4.8 years (interquartile range [IQR], 1.3-11.4 years) and 5.9 years (IQR, 2.6-13.1 years), respectively. The mean physical functioning score on child and parent reports were 81.2 ± 17.3 and 77.1 ± 23.7, respectively. Compared to a matched healthy population, transplant survivors and their parents reported lower physical function scores (P < 0.001); 32.9% of patients and 35.0% of parents reported a physical function score <75, which is > 1 standard deviation below the mean of a healthy population. Physical functioning scores were significantly higher in survivors with optimal health than those with nonoptimal health (P < 0.01). There was a significant relationship between emotional functioning and physical functioning scores for LT recipients (r = 0.69; P < 0.001). In multivariate analysis, primary disease, height z score < -1.64 at longterm follow-up (LTF) visit, > 4 days of hospitalization since LTF visit, and not being listed as status 1 were predictors of poor physical function. In conclusion, pediatric LT recipients 1-2 years after LT and their parents report lower physical function than a healthy population. Findings suggest practitioners need to routinely assess physical function, and the development of rehabilitation programs may be important.
Assuntos
Nível de Saúde , Transplante de Fígado/efeitos adversos , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Hospitalização , Humanos , Lactente , Hepatopatias/cirurgia , Transplante de Fígado/mortalidade , Masculino , Análise Multivariada , Sistema de Registros/estatística & dados numéricos , Inquéritos e Questionários , Sobreviventes/psicologia , Resultado do TratamentoRESUMO
OBJECTIVES: To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan. STUDY DESIGN: Cross-sectional. The Pediatric Quality of Life Inventory (PedsQL) was administered to 408 survivors of Fontan ages 13-25 years enrolled in the Pediatric Heart Network Fontan Follow-up Study. Subjects also completed either the Child Health Questionnaire (age <19 years) or Short Form Health Survey (age ≥ 19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined. RESULTS: Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001). CONCLUSIONS: Survivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00132782.
Assuntos
Técnica de Fontan/psicologia , Qualidade de Vida , Adolescente , Adulto , Fatores Etários , Estudos Transversais , Feminino , Seguimentos , Humanos , Masculino , Inquéritos e Questionários , Sobreviventes , Estados Unidos/epidemiologia , Adulto JovemRESUMO
OBJECTIVE: To compare health-related quality of life (HRQOL) in pediatric patients with functional gastrointestinal disorders (FGIDs) and organic gastrointestinal (GI) diseases with an age-, sex-, and race/ethnicity-matched healthy sample across GI diagnostic groups and with one another. STUDY DESIGN: The Pediatric Quality of Life Inventory 4.0 Generic Core Scales were completed in a 9-site study by 689 families. Patients had 1 of 7 physician-diagnosed GI disorders: chronic constipation, functional abdominal pain, irritable bowel syndrome, functional dyspepsia, Crohn's disease, ulcerative colitis, and gastroesophageal reflux disease. The healthy control sample included 1114 families. School days missed, days in bed and needing care, parent missed workdays, work impact, and healthcare utilization were compared as well. RESULTS: Patients with an FGID or organic GI disease demonstrated lower HRQOL than the healthy controls across all dimensions (physical, emotional, social, and school; P < .001 for all), with larger effect sizes for patients with an FGID. Patients with an FGID manifested lower HRQOL than those with an organic GI disease. Patients with an FGID or organic GI disease missed more school, spent more days in bed and needing care, had greater healthcare utilization, and had parents who missed more workdays with greater work impact (P < .001 for most), with larger effect sizes for the patients with an FGID. CONCLUSION: Patients with an FGID or organic GI disease demonstrate impaired HRQOL compared with healthy children. HRQOL can be used as a common metric to compare patient outcomes in clinical research and practice both within and across groups of patients with FGIDs and organic GI diseases.
Assuntos
Gastroenteropatias/psicologia , Qualidade de Vida/psicologia , Adolescente , Criança , Pré-Escolar , Efeitos Psicossociais da Doença , Feminino , Nível de Saúde , Humanos , Masculino , Índice de Gravidade de Doença , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To evaluate the impact of traumatic dental injuries (TDI) on oral health-related quality of life (OHRQoL) among Brazilian adolescents. METHODS: A population-based case-control study was carried out, which was nested to a cross-sectional study with a sample of 1215 adolescents aged 11-14 years from Belo Horizonte, Brazil. OHRQoL was measured using the Brazilian version of the Child Perceptions Questionnaire (CPQ11-14 )--Impact Short Form (ISF:16). Two-step cluster analysis was performed to define cases and controls based on CPQ11-14--ISF:16 scores. This method considers the pattern of responses for each item separately and how important each item is to the formation of clusters. The case group included those adolescents who presented higher negative impact on OHRQoL (n=405), while the control group included those with lower negative impact (n=810). Two controls for each case were individually matched from the same school and gender. The main independent variable was TDI, diagnosed by the Andreasen's classification. Untreated dental caries, malocclusion, and age were confounding variables. Conditional logistic regression analysis was performed with the significance level set at 5%. RESULTS: A multiple conditional logistic regression model demonstrates that adolescents diagnosed with fracture involving dentin and/or pulp had a 2.40-fold greater chance of presenting high negative impact on QHRQoL [95% CI=1.26-4.58; P=0.008] than those without evidence of fractures. Enamel fracture only [P=0.065] and restored fractures [P=0.072] were not statistically associated with OHRQoL. CONCLUSIONS: Adolescents with more severe untreated TDI, such as fractures involving dentin and/or pulp, were more likely to self-report a higher negative impact on their OHRQoL than those without TDI.
Assuntos
Saúde Bucal , Qualidade de Vida , Traumatismos Dentários/epidemiologia , Adolescente , Brasil/epidemiologia , Estudos de Casos e Controles , Criança , Estudos Transversais , Cárie Dentária/epidemiologia , Feminino , Humanos , Masculino , Má Oclusão/epidemiologia , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To quantify health related quality of life (HRQOL) of patients with biliary atresia with their native livers and compare them with healthy children and patients with biliary atresia post-liver transplant (LT) and to examine the relationship between HRQOL and medical variables. STUDY DESIGN: A cross-sectional HRQOL study of patients with biliary atresia with their native livers (ages 2-25 years) was conducted and compared with healthy and post-LT biliary atresia samples using Pediatric Quality of Life Inventory 4.0 child self and parent proxy reports, a validated measure of physical/psychosocial functioning. RESULTS: 221 patients with biliary atresia with native livers (54% female, 67% white) were studied. Patient self and parent proxy reports showed significantly poorer HRQOL than healthy children across all domains (P < .001), particularly in emotional and psychosocial functioning. Child self and parent proxy HRQOL scores from patients with biliary atresia with their native livers and post-LT biliary atresia were similar across all domains (P = not significant). Child self and parent proxy reports showed moderate agreement across all scales, except social functioning (poor to fair agreement). On multivariate regression analysis, black race and elevated total bilirubin were associated with lower Total and Psychosocial HRQOL summary scores. CONCLUSIONS: HRQOL in patients with biliary atresia with their native livers is significantly poorer than healthy children and similar to children with post-LT biliary atresia. These findings identify significant opportunities to optimize the overall health of patients with biliary atresia.
Assuntos
Atresia Biliar/fisiopatologia , Atresia Biliar/psicologia , Qualidade de Vida , Adolescente , Adulto , Criança , Pré-Escolar , Estudos de Coortes , Estudos Transversais , Feminino , Humanos , Fígado/patologia , Transplante de Fígado , Masculino , Modelos Estatísticos , Análise Multivariada , Pediatria/métodos , Análise de Regressão , Adulto JovemRESUMO
BACKGROUND: Oral and orofacial problems may cause a profound impact on children's oral health-related quality of life (OHRQoL) because of symptoms associated with these conditions that may influence the physical, psychological and social aspects of their daily life. The OHRQoL questionnaires found in the literature are very specific and are not able to measure the impact of oral health on general health domains. Consequently, the objective of this study was to evaluate the psychometric properties of the Portuguese version for Brazilian translation of the Pediatric Quality of Life Inventory™ (PedsQL™) Oral Health Scale in combination with the PedsQL™ 4.0 Generic Core Scales. METHODS: The PedsQL™ Oral Health Scale was forward-backward translated and cross-culturally adapted for the Brazilian Portuguese language. In order to assess the feasibility, reliability and validity of the Brazilian version of the instrument, a study was carried out in Belo Horizonte with 208 children and adolescents between 2 and 18 years-of-age and their parents. Clinical evaluation of dental caries, socioeconomic information and the Brazilian versions of the PedsQL™ Oral Health Scale, PedsQL™ 4.0 Generic Core Scales, Child Perceptions Questionnaire (CPQ11-14 and CPQ8-10) and Parental-Caregiver Perception Questionnaire (P-CPQ) were administered. Statistical analysis included feasibility (missing values), confirmatory factor analysis (CFA), internal consistency reliability, and test-retest intraclass correlation coefficients (ICC) of the PedsQL™ Oral Health Scale. RESULTS: There were no missing data for both child self-report and parent proxy-report on the Brazilian version of the PedsQL™ Oral Health Scale. The CFA showed that the five items of child self-report and parent proxy-report loaded on a single construct. The Cronbach's alpha coefficients for child/adolescent and parent oral health instruments were 0.65 and 0.59, respectively. The test-retest reliability (ICC) for child self-report and parent proxy-report were 0.90 [95% confidence interval (CI) = 0.86-0.93] and 0.86 (95%CI = 0.81-0.90), respectively. The PedsQL™ Oral Health Scale demonstrated acceptable construct validity, convergent validity and discriminant validity. CONCLUSIONS: These results supported the feasibility, reliability and validity of the Brazilian version of the PedsQL™ Oral Health Scale for child self-report for ages 5-18 years-old and parent proxy-report for ages 2-18 years-old children.
Assuntos
Indicadores Básicos de Saúde , Saúde Bucal , Pediatria/instrumentação , Qualidade de Vida , Inquéritos e Questionários/normas , Adolescente , Brasil , Criança , Comparação Transcultural , Índice CPO , Feminino , Humanos , Masculino , Pais/psicologia , Portugal , Psicometria , Reprodutibilidade dos Testes , Fatores Socioeconômicos , Inquéritos e Questionários/economia , TraduçãoRESUMO
OBJECTIVES: To determine clinical and health-related quality of life outcomes, and to derive an "ideal" composite profile of children alive 10 years after pediatric liver transplantation (LT) performed in the US and Canada. STUDY DESIGN: This was a multicenter cross-sectional analysis characterizing patients enrolled in the Studies of Pediatric Liver Transplantation database registry who have survived >10 years from LT. RESULTS: A total of 167 10-year survivors were identified, all of whom received daily immunosuppression therapy. Comorbidities associated with the post-LT course included post-transplantation lymphoproliferative disease (in 5% of patients), renal dysfunction (9%), and impaired linear growth (23%). Health-related quality of life, as assessed by the PedsQL 4.0 Generic Core Scales, revealed lower patient self-reported total scale scores for 10-year survivors compared with matched healthy children (77.2±12.9 vs 84.9±11.7; P<.001). At 10 years post-LT, only 32% of patients achieved an ideal profile of a first allograft stable on immunosuppression monotherapy, normal growth, and absence of common immunosuppression-induced sequelae. CONCLUSION: Success after pediatric LT has moved beyond patient survival. Availability of an ideal composite profile at follow-up provides opportunities for patients, families, and healthcare providers to identify broader sets of outcomes at earlier stages, ultimately contributing to improved outcomes after pediatric LT.
Assuntos
Nível de Saúde , Transplante de Fígado/mortalidade , Qualidade de Vida , Sobreviventes/estatística & dados numéricos , Imunologia de Transplantes , Adolescente , Distribuição por Idade , Criança , Proteção da Criança , Pré-Escolar , Estudos Transversais , Bases de Dados Factuais , Feminino , Seguimentos , Rejeição de Enxerto , Sobrevivência de Enxerto , Humanos , Incidência , Lactente , Falência Hepática/diagnóstico , Falência Hepática/cirurgia , Transplante de Fígado/imunologia , Transplante de Fígado/métodos , Masculino , Ontário , Complicações Pós-Operatórias/diagnóstico , Complicações Pós-Operatórias/mortalidade , Distribuição por Sexo , Fatores de Tempo , Resultado do Tratamento , Estados UnidosRESUMO
OBJECTIVE: To translate into and adapt to Brazilian Portuguese the Peds QL TM - End Stage Renal Disease version 3.0 questionnaire. METHOD: The methodology proposed by the creator of the original questionnaire was adopted. It consisted of 4 phases: translation from English into Brazilian Portuguese, back-translation into English, application to a population sample and proof-reading and completion. The translations and review were made by professional experts in Portuguese and English. The questionnaires were composed of versions for children and adolescents' reports and parents' reports, and were divided according to age ranges: 2-4 years (parents' report only), 5-7 years, 8-12 years and 13-18 years. 35 interviews were conducted with 15 children and adolescents and 20 carergivers. CONCLUSIONS: The process of translation and cultural adaptation, which consisted of semantic equivalence (equivalence between words), idiomatic equivalence (no equivalent expressions found or items that needed to be replaced) and experimental equivalence (words and situations appropriate to the Brazilian cultural context), resulted in a version that was understandable and easy to apply.