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Cómo los pacientes buscan y valoran la información en línea sobre cicatrices: un estudio cualitativo
Koen Maertens1,2, Nancy Van Loey1, Peter Moortgat1
1Organisation for Burns, Scar Aftercare & Research (OSCARE), 2170 Antwerp, Belgium.
European burn journal
|February 20, 2026
Resumen
Este estudio optimizó MyScarSpecialist.com, un sitio web basado en evidencia para cicatrices patológicas (CP), mediante el codiseño de contenido con pacientes y médicos. El objetivo fue mejorar la accesibilidad de la información y el empoderamiento del paciente en el manejo de cicatrices.
Área de la Ciencia:
- Dermatología
- Informática de la Salud
- Educación del Paciente
Sus antecedentes:
- Las cicatrices patológicas (CP) presentan desafíos significativos, sin embargo, la información confiable es escasa, lo que lleva a la dependencia de fuentes en línea no validadas.
- MyScarSpecialist.com se desarrolló como un recurso basado en evidencia para información sobre cicatrices.
- Este estudio se centró en optimizar el sitio web a través de la cocreación con pacientes y médicos.
Objetivo del estudio:
- Optimizar el sitio web basado en evidencia MyScarSpecialist.com.
- Mejorar la participación de pacientes y médicos en el desarrollo del sitio web.
- Mejorar la accesibilidad y la exhaustividad de la información sobre cicatrices patológicas.
Principales métodos:
- Se llevaron a cabo reuniones de grupos focales semistructuradas con pacientes y cuidadores.
- Se grabaron, transcribieron y analizaron temáticamente las sesiones de grupos focales.
- Se emplearon principios de codiseño que involucran a los usuarios finales.
Principales resultados:
- Identificó temas clave en las fuentes de información, el contenido deseado, las preferencias de diseño del sitio web y la legibilidad.
- Los pacientes y cuidadores enfatizaron la necesidad de un mayor apoyo entre pares y recursos sobre el impacto psicosocial de las cicatrices.
- Destacó las preferencias de la audiencia en cuanto a la superposición de contenido, la carga de información y la ubicación de las imágenes.
Conclusiones:
- Las estrategias codiseñadas son cruciales para optimizar los sitios web de educación médica.
- Garantizar la inclusión, la accesibilidad y el empoderamiento del paciente es clave.
- Los hallazgos ofrecen información para el desarrollo de recursos de salud en línea efectivos.
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