RESUMEN
Introducción: el trasplante pulmonar se ha consolidado en los uÌltimos anÌos como una opcioÌn terapeÌutica para ninÌos y adolescentes con enfermedad pulmonar grave en la que han fracasado otros tratamientos. Este procedimiento otorga una buena calidad de vida y una supervivencia prolongada, similar a la del trasplante realizado en pacientes adultos. La indicacioÌn general para el trasplante pulmonar es la insuficiencia respiratoria progresiva, y potencialmente letal, debida a una enfermedad pulmonar parenquimatosa o vascular. La selección de candidatos a trasplante es compleja, requiriendo condiciones médicas y socioambientales específicas. Objetivos: analizar las características clínicas de los pacientes pediátricos con enfermedades pulmonares crónicas derivados para evaluación por el equipo de trasplante pulmonar de Uruguay. Analizar las características clínicas y sobrevida de los pacientes trasplantados pulmonares pediátricos uruguayos. Material y métodos: estudio descriptivo y retrospectivo de todos los pacientes menores de 19 años derivados al equipo de trasplante pulmonar entre 2003 y 2023. Datos obtenidos de la base del programa y mediante revisión de historias clínicas. Resultados: se incluyeron 30 pacientes (15 de sexo masculino). La media de edad de los pacientes derivados fue de 13,4 ± 3,6 años. Las etiologías de los pacientes derivados fueron 17/30 (56,6%) fibrosis quística, 4/30 (13,3%) bronquiolitis obliterante postrasplante de médula ósea, 4/30 (13,3%) hipertensión pulmonar, 3/30 (10%) bronquiolitis obliterante posinfecciosa y 2/30 (6,6%) enfermedad pulmonar intersticial difusa. Ingresaron en lista de trasplante 14 pacientes, de los cuales 9 se trasplantaron, 1 se mantiene en lista de espera y 4 fallecieron a la espera del trasplante. Del resto de los pacientes derivados para evaluación: 7 pacientes se encuentran aún en evaluación. Fueron excluidos por razones psicosociales o causas médicas 2 pacientes. Dos pacientes tuvieron pérdida de seguimiento y otros 5 fallecieron durante la evaluación. Las etiologías de los pacientes trasplantados pediátricos fueron fibrosis quística (3/9), bronquiolitis obliterante postrasplante de médula ósea (3/9) e hipertensión pulmonar (3/9). De los pacientes trasplantados, 5 fallecieron (2 en el posoperatorio y 3 fallecieron por sepsis entre 1-2 años postrasplante). Los restantes pacientes están en seguimiento postrasplante hace un mes, 2, 7 y 9 años. No se han encontrado diferencias estadísticamente significativas en la sobrevida condicional cuando se compararon pacientes adultos y pediátricos. Conclusiones: los resultados en los pacientes trasplantados en cuanto a caracteriÌsticas y causas de mortalidad son comparables con los reportados internacionalmente. La mortalidad postrasplante fue algo mayor que en otros estudios, pero creemos que existe sesgo por el bajo número de pacientes. Dados los resultados mencionados, planteamos que el trasplante sigue siendo una alternativa terapéutica válida en nuestro medio. Los desafíos de este tratamiento incluyen la disponibilidad limitada de órganos de donantes adecuados, la toxicidad de los medicamentos inmunosupresores necesarios para prevenir el rechazo, la prevención y el tratamiento de la bronquiolitis obliterante, así como maximizar el crecimiento, el desarrollo y la calidad de vida de los receptores.
Summary: Introduction: lung transplantation has been recently consolidated as a therapeutic option for children and adolescents with severe lung disease when other treatments have failed. This procedure provides a good quality of life and additional survival, similar to that of transplantation in adult patients. The general indication for lung transplantation is progressive, potentially fatal respiratory failure due to parenchymal or vascular lung disease. The selection of transplant candidates is complex, requiring specific medical and socio-environmental conditions. Objectives: to analyze the clinical characteristics of pediatric patients with chronic lung diseases referred for evaluation by the Uruguayan lung transplant team. To analyze the clinical characteristics and survival of Uruguayan pediatric lung transplant patients. Material and methods: descriptive and retrospective study of all patients under 19 years of age referred to the lung transplant team between 2003 and 2023. The data was obtained from the program's database and through medical records' review. Results: 30 patients were included (15 male). The mean age of the referred patients was 13.4 ± 3.6 years. Etiologies were 17/30 (56.6%) cystic fibrosis, 4/30 (13.3%) bronchiolitis obliterans post-bone marrow transplant, 4/30 (13.3%) pulmonary hypertension, 3 /30 (10%) post-infectious bronchiolitis obliterans, and 2/30 (6.6%) diffuse interstitial lung disease. 14 patients were placed on the transplant list, of which 9 were transplanted, 1 remains on the waiting list and 4 died while waiting for the transplant. Of the rest of the patients referred for evaluation: 7 patients are still under evaluation. 2 patients were excluded for psychosocial reasons or medical reasons. 2 patients could not be followed-up and other 5 died during the evaluation. The etiologies of the pediatric transplant patients were cystic fibrosis (3/9), post-bone marrow transplant bronchiolitis obliterans (3/9), and pulmonary hypertension (3/9). Of the transplanted patients, 5 died (two in the post-operative period, and three died from sepsis between 1-2 years post-transplant). The remaining patients are in post-transplant follow-up for 1 month, 2, 7 and 9 years. No statistically significant differences in conditional survival were found when comparing adult and pediatric patients. Conclusions: results in transplanted patients in terms of characteristics and causes of mortality are comparable with those reported internationally. Post-transplant mortality was somewhat higher than in other studies, but we believe that there is bias due to the low number of patients. Given the results above, we propose that transplantation continues to be a valid therapeutic alternative in our country. The challenges of this treatment include the limited availability of suitable donor organs, the toxicity of immunosuppressive medications necessary to prevent rejection, prevention and treatment of bronchiolitis obliterans, as well as maximizing the growth, development and quality of life of the receivers.
Introdução: o transplante pulmonar consolidou-se nos últimos anos como opção terapêutica para crianças e adolescentes com doença pulmonar grave, nas quais outros tratamentos falharam. Esse procedimento proporciona boa qualidade de vida e sobrevida prolongada, semelhante ao transplante realizado em pacientes adultos. A indicação geral para transplante pulmonar é insuficiência respiratória progressiva e potencialmente fatal devido a doença pulmonar parenquimatosa ou vascular. A seleção de candidatos a transplantes é complexa, exigindo condições médicas e socioambientais específicas. Objetivos: analisar as características clínicas de pacientes pediátricos com doenças pulmonares crônicas encaminhados para avaliação pela equipe uruguaia de transplante pulmonar. Analisar as características clínicas e a sobrevida de pacientes pediátricos uruguaios transplantados pulmonares. Material e métodos: estudo descritivo e retrospectivo de todos os pacientes menores de 19 anos encaminhados à equipe de transplante pulmonar entre 2003 e 2023. Os dados foram obtidos no banco de dados do programa e por meio de revisão de prontuários. Foram incluídos 30 pacientes (15 do sexo masculino). A média de idade dos pacientes encaminhados foi de 13,4 ± 3,6 anos. As etiologias dos pacientes encaminhados foram 17/30 (56,6%) fibrose cística, 4/30 (13,3%) bronquiolite obliterante pós-transplante de medula óssea, 4/30 (13,3%) hipertensão pulmonar, 3/30 (10%) pós -bronquiolite obliterante infecciosa e 2/30 (6,6%) doença pulmonar intersticial difusa. Foram colocados na lista de transplante 14 pacientes, dos quais 9 foram transplantados, 1 permanece em lista de espera e 4 faleceram enquanto aguardavam o transplante. Do restante dos pacientes encaminhados para avaliação: 7 pacientes ainda estão em avaliação, 2 pacientes foram excluídos por motivos psicossociais ou médicos. 2 pacientes foram perdidos no acompanhamento e outros 5 faleceram durante a avaliação. As etiologias dos pacientes transplantados pediátricos foram fibrose cística (3/9), bronquiolite obliterante pós-transplante de medula óssea (3/9) e hipertensão pulmonar (3/9). Dos pacientes transplantados, 5 faleceram (dois no pós-operatório e três por sepse entre 1-2 anos pós-transplante). Os demais pacientes estão em acompanhamento pós-transplante por 1 mês, 2, 7 e 9 anos. Não foram encontradas diferenças estatisticamente significativas na sobrevida condicional quando comparamos pacientes adultos e pediátricos. Conclusões: os resultados em pacientes transplantados em termos de características e causas de mortalidade são comparáveis aos relatados internacionalmente. A mortalidade pós-transplante foi um pouco maior do que em outros estudos, mas acreditamos que exista viés devido ao baixo número de pacientes. Diante dos resultados acima mencionados, propomos que o transplante continue sendo uma alternativa terapêutica válida em nosso meio. Os desafios deste tratamento incluem a disponibilidade limitada de órgãos de doadores adequados, a toxicidade dos medicamentos imunossupressores necessários para prevenir a rejeição, prevenção e tratamento da bronquiolite obliterante, bem como maximizar o crescimento, desenvolvimento e qualidade de vida dos receptores.
Asunto(s)
Humanos , Preescolar , Niño , Adolescente , Trasplante de Pulmón/estadística & datos numéricos , Enfermedades Pulmonares/cirugía , Derivación y Consulta , Uruguay/epidemiología , Enfermedad Crónica , Tasa de Supervivencia , Estudios Retrospectivos , Enfermedades Pulmonares/complicaciones , Enfermedades Pulmonares/epidemiologíaRESUMEN
The acknowledgment of the qualities and features of the world is made through the body, movement, and imagination. During their development, children learn new skills, complexify their thoughts, and become more autonomous. The progressive increase in motor repertoire in children reflects a more unified and solid self. Nowadays, there is a generalized restriction of the movement of children. It starts at home when parents establish rigid and/or phobic attachments with their children; it can be also observed at school which is more and more based on rigid learning rhythms and obsessive ideas about students' performance, and finally in urban areas where free and outdoor play has considerably decreased during recent decades. The current lifestyles in Western societies resulted in a decrease in play among children. The culture influences the dominant types of psychopathology and, during childhood, mental suffering is often expressed with the increase (turmoil) or decrease (inhibition) of the body movement. Sports are underpinned by movement and play; they are a powerful tool in health promotion and an excellent way to assign meaning to movement. This work is an essay about the importance of play and youth sports in child development.
RESUMEN
BACKGROUND: This paper fills a gap in the applied research field, for a local context, by addressing the topics of describing cataract surgery' clinical outcomes; quality of life (QoL); and costs of the patients treated after the implementation of the ICHOM standard set. METHODS: This is a retrospective observational study using real-world data (RWD). We included all patients subjected to cataract surgery at the Portuguese Institute of oncology - Porto (IPO-Porto), Portugal, after 3 months follow up period completed between 5th June 2017 and 21st May 2018. The following inclusion criteria: corrected visual acuity of ≤ 6/10 or other significant visual disturbance due to lens opacity or the existence of a large anisometropia. A circuit was implemented based on the ICHOM standard for cataract, to measure clinical variables (e.g. visual acuity) and QoL (CATQUEST-9SF) before and after surgery, and cost of treatment. The results were explored by means of a paired-sample t-test, considering normality assumptions. RESULTS: Data refers to 268 patients (73 P25-P75:32-95 years old), regarding 374 eyes. The cataract surgery had a positive effect on visual acuity (p < 0.001), refraction (right and left cylinder; p < 0.001) and all QoL dimensions. The vast majority of patients, around 98%, reported improvements in QoL. Based on IPO-Porto administrative records, the direct cost of treating cataracts (per eye) is of 500, representing a total cost of 187,000 for the number of patients operated herein. CONCLUSION: This study reports the successful implementation of the ICHOM standard set for cataracts in a Portuguese institution and confirms that cataract surgery provides a rapid visual recovery, with excellent visual outcomes and minimal complications in most patients, while also having a positive impact on patients' quality of life.