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Herramientas de Salud Digital Integradas en una Clínica de Genética del Cáncer: Estudio Observacional

Sujay Nagaraj1,2, Ron Rabinowicz2,3, Sarah Goodday4,5

  • 1Department of Computer Science, University of Toronto, Toronto, ON, Canada.

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Resumen
Este resumen es generado por máquina.

Las Herramientas de Salud Digital (DHT) muestran ser prometedoras para el monitoreo de pacientes con síndrome de Li-Fraumeni (LFS), capturando datos psicológicos y fisiológicos vitales. Los hallazgos sugieren que las DHT pueden ayudar en la detección e intervención temprana de la angustia en familias de alto riesgo.

Palabras clave:
cáncersalud digitalparticipaciónpediatríawearables

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Área de la Ciencia:

  • Salud Digital
  • Genética
  • Oncología

Sus antecedentes:

  • Las Herramientas de Salud Digital (DHT) ofrecen potencial para la atención personalizada, pero su participación y utilidad, especialmente en poblaciones pediátricas, no se comprenden bien.
  • El síndrome de Li-Fraumeni (LFS) requiere vigilancia continua del cáncer y causa un estrés psicológico significativo debido a la mutación del gen supresor de tumores TP53.

Objetivo del estudio:

  • Evaluar la participación del usuario en las DHT en una clínica de genética del cáncer LFS.
  • Explorar la utilidad clínica de las DHT tanto para pacientes LFS como para clínicos.
  • Recopilar información para integrar las DHT en el manejo de enfermedades crónicas y la investigación.

Principales métodos:

  • Un estudio observacional (enero-diciembre de 2022) incluyó a 45 participantes (9 niños, 36 adultos) con LFS.
  • Los participantes utilizaron un reloj inteligente Empatica EmbracePlus y completaron encuestas de bienestar psicosocial.
  • Se analizó la participación utilizando análisis de supervivencia, patrones fisiológicos con modelos aditivos generalizados y la experiencia del usuario a través de entrevistas.

Principales resultados:

  • Los adultos mostraron un mayor tiempo de uso del reloj inteligente (81% vs 56%) y retención en el estudio (153 vs 77 días) que los niños.
  • Los niños informaron significativamente mayores síntomas depresivos, deterioro del sueño y niveles de estrés.
  • Los datos fisiológicos revelaron patrones de estrés vinculados a la vigilancia del cáncer, y un sistema de alerta de suicidio activó intervenciones para 5 participantes.

Conclusiones:

  • Las DHT son factibles para capturar datos psicológicos y fisiológicos significativos en poblaciones pediátricas y familiares de alto riesgo con LFS.
  • Las DHT facilitan la detección temprana de la angustia y las intervenciones dirigidas, mejorando la atención al paciente.
  • Estos hallazgos respaldan la integración de DHT centrada en el paciente en oncología pediátrica y otras aplicaciones de salud digital.