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Oportunidades perdidas: información de un solo centro sobre los cuidados paliativos cardíacos prenatales
Hannah Tredway1, Katie Moynihan1, Hadley Bloomhardt2
1Department of Cardiology, Boston Children's Hospital, Boston, MA,; Department of Pediatrics, Harvard Medical School.
The Journal of pediatrics
|August 23, 2025
Resumen
La atención paliativa prenatal (PC) para la enfermedad cardíaca congénita crítica (CCHD, por sus siglas en inglés) está subutilizada, con solo el 12% de los pacientes recibiendo consulta. La PC de rutina para los casos de CCHD de alto riesgo podría mejorar la atención.
Área de la Ciencia:
- Cardiología Pediátrica
- Cuidados paliativos
- Medicina neonatal
Sus antecedentes:
- La enfermedad cardíaca congénita crítica (CCHD) presenta una morbilidad y mortalidad significativas.
- La consulta de cuidados paliativos de subespecialidad (PC) puede mejorar la toma de decisiones compartida y reducir el estrés familiar.
- El uso actual de PC prenatal para CCHD no está bien definido.
Objetivo del estudio:
- Evaluar la tasa de utilización de los cuidados paliativos prenatales (PC) en pacientes con diagnóstico de enfermedad cardíaca congénita crítica (CCHD).
- Identificar los factores asociados con la consulta precoz del médico de cabecera en pacientes con ECC.
- Evaluar la necesidad de una consulta de rutina con un médico especialista en casos de ECC de alto riesgo.
Principales métodos:
- Estudio retrospectivo de los diagnósticos prenatales de ECC (2020-2023) en un centro terciario.
- Datos recopilados sobre la hospitalización inicial, el momento de la consulta y los resultados.
- Se define la PC temprana como prenatal o > 30 días antes de la muerte.
Principales resultados:
- Se identificaron 506 diagnósticos prenatales de ECC; sólo el 12% (n=61) tuvo una consulta de PC, con 4 prenatales.
- La PC temprana fue más común en pacientes con diagnósticos genéticos (61%) o anomalías no cardíacas (61%).
- El 18% de los pacientes sometidos a cirugía neonatal compleja recibieron una consulta de PC; el 12% de estos pacientes fallecieron.
Conclusiones:
- La utilización de los cuidados paliativos prenatales para la ECC sigue siendo baja.
- Se recomienda la consulta de rutina del médico para los pacientes de alto riesgo de ECC para mejorar la atención.
- La mejora de la integración de PC puede apoyar a los pacientes con ECC y a las familias que enfrentan viajes médicos complejos.
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