ABSTRACT
BACKGROUND: The Pediatric Quality of Life (PedsQL4.0TM) scale has been shown to be reliable and valid in assessing health related quality of life (HRQOL). However, its Tagalog version has not been field-tested. OBJECTIVES: To determine the reliability and validity of the PedsQL4.0TM Tagalog version and to compare the HRQOL of Filipino liver transplant (LT) recipients, children with chronic liver disease (CLD) and healthy controls. METHODOLOGY: This is a cross-sectional study that included Filipinos 2-18 years who had undergone LT and those with CLD. PedsQL4.0TM Tagalog version was administered as a proxy-report for caregivers and child-report for children >5 years. RESULTS: 237 PedsQL4.0 questionnaires were completed. Reliability was demonstrated for psychosocial (Cronbach =0.86-0.88), physical ( =0.86-0.88) and total ( =0.89-0.92) health summary scores. Construct validity showed a medium to large effect size (0.39-1.34) between patients and controls. No difference was noted on the total health summary scores and the individual domains between LT recipients and controls while the scores of patients with CLD were significantly lower compared to LT recipients and healthy subjects. CONCLUSIONS: The PedsQL4.0TM Tagalog version is a valid and reliable HRQOL tool. The HRQOL of LT recipients is similar to healthy children while CLD patients had poorer HRQOL.
Subject(s)
Humans , Male , Female , Adolescent , Child , Caregivers , Quality of Life , Liver Transplantation , Healthy Volunteers , Reproducibility of Results , Liver DiseasesABSTRACT
El trasplante hepático pediátrico (THP) es la única alternativa de tratamiento para niños que padecen enfermedades hepáticas terminales, ya sean éstas agudas o crónicas. En Chile el THP representa aproximadamente un 20 por ciento del total de trasplantes de hígado realizados en nuestro país. Objetivo: Exponer las indicaciones, procedimientos y principales complicaciones del THP desde el punto de vista teórico y realizar un estudio descriptivo de la experiencia recogida por el grupo de trasplante pediátrico de Clínica Las Condes y Hospital Luis Calvo Mackenna desde 1994 a 2009 en esta materia. Material y Métodos: Se recolectaron los datos de 209 trasplantes hepáticos realizados a 173 pacientes menores de 18 entre 1994 y 2009 en ambos centros, realizando estadística descriptiva y curvas de sobrevida de Kaplan y Meier. Resultados: Las principales causas de trasplante fueron Atresia de Vías Biliares (48 por ciento) y Falla hepática aguda (28 por ciento). Cuarenta y un trasplantes se realizaron en niños menores de 10 kilos. Se trasplantaron con donante vivo 27 por ciento de los casos. Las complicaciones vasculares se presentaron en 13 por ciento de los casos y las biliares en 14 por ciento. Rechazos moderados o severos se diagnosticaron en 36 por ciento de los trasplantes. Enfermedad por Citomegalovirus se detectó en 30 por ciento de los pacientes dentro del primer año post trasplante y síndrome linfoproliferativo en 5 por ciento. La sobrevida actuarial de pacientes a 1 año ha sido de 76 por ciento, a 5 años de 67 por ciento y a 10 años de 65 por ciento. Conclusión: Los resultados del THP en términos de sobrevida y complicaciones es similar a la experiencia de centros extranjeros, la cual es superior a las expectativas y calidad de vida de los pacientes sin trasplante. Las áreas de mayor desarrollo de nuestro centro y que presentan los mayores desafíos son el trasplante hepático en niños menores de 10 kilos, en falla hepática aguda, y el uso de donante vivo.
Pediatric liver transplantation (PLT) is the only therapeutic option for children with acute or chronic end stage liver disease. In Chile PLT represents approximately 20 percent of all liver transplants performed. Objective: To present indications, procedures and main complications of PLT from an theoretic point of view and describe the experience achieved by the pediatric liver transplant team of Clínica Las Condes and Hospital Luis Calvo Mackenna from 1994 to 2009 in this field. Methods: Data from 209 liver transplants performed in 173 patients younger than 18 years old, between 1994 and 2009 were analyzed with descriptive statistics. Kaplan-Meiersactuarial survival graphs were calculated. Results: The main liver diseases leading to PLT were Biliary Atresia (48 percent) and Acute Liver Failure (28 percent). Forty-one transplants were performed in children weighting b 10 kilograms. Living donor was used in 27 percent of the cases. Vascular complications occurred in 13 percent and biliary reoperations performed in 14 percent. Moderate and severe acute graft rejection was diagnosed in 36 percent of the transplants. Cytomegalovirus disease occurred in 30 percent of the cases and post transplant lymphoproliferative disease in 5 percent. Actuarial patients survival at 1 year has been 76 percent, at 5 years 67 percent and at 10 years 65 percent. Conclusion: Results of PLT in terms of survival and complications is comparable to foreign transplant centers, which is superior to life expectancy and quality of life of these patients without liver transplant. The areas that have exhibit major development in our center and represent the biggest challenge are liver transplant in small children, in patients with acute liver failure, and the use of living donors.
Subject(s)
Humans , Adolescent , Child , Liver Failure/epidemiology , Graft Rejection/epidemiology , Liver Transplantation/statistics & numerical data , Chile , Epidemiology, Descriptive , Monitoring, Physiologic , Patient Selection , Quality of Life , Survival Analysis , Liver Transplantation/adverse effects , Liver Transplantation/mortality , Waiting ListsABSTRACT
O presente estudo buscou compreender o impacto do transplante hepático infantil (THI) na dinâmica familiar. Participaram da pesquisa seis mães de crianças transplantadas de fígado. O tempo pós-transplante variou entre um e seis anos. As mães foram entrevistadas a respeito do relacionamento familiar no contexto do THI. Análise de conteúdo qualitativa revelou que a relação genitores-criança doente foi permeada pelo medo da morte, levando a atitudes permissivas e superprotetoras, na tentativa de poupar o filho de mais sofrimentos, sendo que este padrão de relacionamento manteve-se presente mesmo após o transplante e a melhora do quadro de saúde dos filhos. A relação do casal tendeu a fortalecer-se e centrar-se nas preocupações a respeito da doença e do transplante, havendo mais diálogo e união. A relação com os filhos sadios passou para segundo plano, surgindo sentimentos de desamparo, ciúmes e rivalidade nas crianças. A família extensiva, por sua vez, tendeu a tornar-se mais próxima e apresentou um importante papel de apoio. Os resultados apontaram que toda a família foi afetada, havendo necessidade de reestruturação familiar, o que reforça a importância do acompanhamento psicológico precoce e sistemático às famílias, visando facilitar a adaptação à situação de doença, prevenindo o desenvolvimento de problemas emocionais. (AU)
This study attempts to understand the impact of pediatric liver transplantation on family relations. Six mothers of two-parent families whose children had been submitted to liver transplant within the last six years participated in the study. Mothers were interviewed about family relationships in the context of pediatric liver transplantation. Qualitative content analysis of the interviews revealed that parents-child relationship was marked by fear of death, leading to permissive and overprotective attitudes in order to reduce the child's suffering. It was noted that this pattern of behavior was maintained even after transplantation and patient's recovery. Parents' relationship tended to fortify and focus on the child's transplant and illness. Parents' relationship with their healthy children was affected. These children developed feelings of abandonment, competition and rivalry. Relatives tended to become closer and played an important supportive role. The results showed that all family members were affected and needed restructuring which reinforces the importance of early and systematic psychological assistance to the families aiming at a better adaptation to the child's condition, preventing the development of emotional problems. (AU)