ABSTRACT
(1) Background: Transition is a planned movement of paediatric patients to adult healthcare systems, and its implementation is not yet established in all inflammatory bowel disease (IBD) units. The aim of the study was to evaluate the impact of transition on IBD outcomes. (2) Methods: Multicentre, retrospective and observational study of IBD paediatric patients transferred to an adult IBD unit between 2017-2020. Two groups were compared: transition (≥1 joint visit involving the gastroenterologist, the paediatrician, a programme coordinator, the parents and the patient) and no-transition. Outcomes within one year after transfer were analysed. The main variable was poor clinical outcome (IBD flare, hospitalisation, surgery or any change in the treatment because of a flare). Predictive factors of poor clinical outcome were identified with multivariable analysis. (3) Results: A total of 278 patients from 34 Spanish hospitals were included. One hundred eighty-five patients (67%) from twenty-two hospitals (65%) performed a structured transition. Eighty-nine patients had poor clinical outcome at one year after transfer: 27% in the transition and 43% in the no-transition group (p = 0.005). One year after transfer, no-transition patients were more likely to have a flare (36% vs. 22%; p = 0.018) and reported more hospitalisations (10% vs. 3%; p = 0.025). The lack of transition, as well as parameters at transfer, including IBD activity, body mass index < 18.5 and corticosteroid treatment, were associated with poor clinical outcome. One patient in the transition group (0.4%) was lost to follow-up. (4) Conclusion: Transition care programmes improve patients' outcomes after the transfer from paediatric to adult IBD units. Active IBD at transfer impairs outcomes.
ABSTRACT
Introducción: La atrofia muscular espinal tipo 1 (AME-1) suele ser mortal en el primer año de vida sin soporte ventilatorio. La decisión de iniciar dicho soporte o no supone un conflicto ético para los profesionales sanitarios. Material y métodos: Se incluyó un escenario de fracaso respiratorio agudo en un lactante con AME-1 en un programa de formación mediante simulación avanzada para pediatras de atención primaria (PAP). Se analizaron de forma sistemática las actuaciones de 34 grupos de 4 pediatras que participaron en 17 cursos. Se valoraron los aspectos clínicos, éticos y de comunicación con los padres. Resultados: La asistencia técnica inicial (administración de oxígeno y soporte ventilatorio inmediato) fue realizada correctamente por el 94% de los equipos. Sin embargo, los PAP tuvieron problemas al abordar los aspectos éticos del caso. Del 85% de los equipos que plantearon el conflicto ético a los padres, lo hizo por iniciativa propia el 29%, el 23% los excluyó de forma activa y solo el 6% los implicaron y tuvieron en cuenta su opinión en la toma de decisiones. Solo el 11,7% preguntó por la calidad de vida del niño y el 12% por su conocimiento del pronóstico de la enfermedad. Ninguno les explicó las alternativas de tratamiento ni trató de contactar con el pediatra de referencia. Conclusiones: Ante un caso simulado de AME-1, los PAP tienen dificultades para interactuar con la familia e implicarla en la toma de decisiones. La formación práctica de todos los pediatras debería incluir problemas de ética clínica (AU)
Introduction: Spinal muscular atrophy type 1 (SMA-1) tends to be fatal in the first year of life if there is no ventilatory support. The decision whether to start such support is an ethical conflict for healthcare professionals. Material and methods: A scenario of acute respiratory failure in an infant with SMA-1 has been included in a training program using advanced simulation for Primary Care pediatricians (PCP). The performances of 34 groups of 4 pediatricians, who participated in 17 courses, were systematically analyzed. Clinical, ethical and communication aspects with parents were evaluated. Results: The initial technical assistance (Administration of oxygen and immediate ventilatory support) was correctly performed by 94% of the teams. However, the PCP had problems in dealing with the ethical aspects of the case. Of the 85% of the teams that raised the ethical conflict with parents, 29% did so on their own initiative, 23% actively excluded them, and only 6% involved them and took their opinion into account in making decisions. Only 11.7% asked about the quality of life of children and 12% for their knowledge of the prognosis of the disease. None explained treatment alternatives, nor tried to contact the pediatrician responsible for the child. Conclusions: When faced with a simulated SMA-1 infant with respiratory failure, PCP have difficulties in interacting with the family, and to involve it in the decision making process. Practical training of all pediatricians should include case scenarios with an ethical clinical problema (AU)
Subject(s)
Child , Female , Humans , Infant , Male , Simulation Exercise , Muscular Atrophy, Spinal/metabolism , Muscular Atrophy, Spinal/pathology , Respiration/genetics , Primary Health Care , Professional Practice/ethics , Professional Practice/economics , Muscular Atrophy, Spinal/complications , Muscular Atrophy, Spinal/genetics , Primary Health Care/methods , Professional Practice/standards , Professional PracticeABSTRACT
INTRODUCTION: Spinal muscular atrophy type 1 (SMA-1) tends to be fatal in the first year of life if there is no ventilatory support. The decision whether to start such support is an ethical conflict for healthcare professionals. MATERIAL AND METHODS: A scenario of acute respiratory failure in an infant with SMA-1 has been included in a training program using advanced simulation for Primary Care pediatricians (PCP). The performances of 34 groups of 4 pediatricians, who participated in 17 courses, were systematically analyzed. Clinical, ethical and communication aspects with parents were evaluated. RESULTS: The initial technical assistance (Administration of oxygen and immediate ventilatory support) was correctly performed by 94% of the teams. However, the PCP had problems in dealing with the ethical aspects of the case. Of the 85% of the teams that raised the ethical conflict with parents, 29% did so on their own initiative, 23% actively excluded them, and only 6% involved them and took their opinion into account in making decisions. Only 11.7% asked about the quality of life of children and 12% for their knowledge of the prognosis of the disease. None explained treatment alternatives, nor tried to contact the pediatrician responsible for the child. CONCLUSIONS: When faced with a simulated SMA-1 infant with respiratory failure, PCP have difficulties in interacting with the family, and to involve it in the decision making process. Practical training of all pediatricians should include case scenarios with an ethical clinical problem.
