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Capacidad de autocuidado de adultos con fibrosis quística en la transición/transferencia entre servicios

  • Amalia Coca Barbado [1] ; Ester Zamarrón de Lucas [2] ; Rodolfo Álvarez-Sala Walther [2] Árbol académico ; María Concepción Prados Sánchez [2]
    1. [1] Universidad Autónoma de Madrid

      Universidad Autónoma de Madrid

      Madrid, España

    2. [2] Hospital Universitario La Paz

      Hospital Universitario La Paz

      Madrid, España

  • Localización: Anales del sistema sanitario de Navarra, ISSN 1137-6627, Vol. 47, Nº. 2, 2024, págs. 59-70
  • Idioma: español
  • DOI: 10.23938/ASSN.1084
  • Títulos paralelos:
    • Self-care capacity of adult cystic fibrosis patients duringtransition/transfer between services
  • Enlaces
  • Resumen
    • español

      Fundamento. Analizar los conocimientos, habilidades y estado emocional de los pacientes con fibrosis quística (FQ) en un momento del seguimiento, comparándolos con el recuerdo que tenían de la transición (paso planificado y progresivo desde la unidad infantil) / transferencia (traspaso sin mediar los pasos recomendados por las guías) a una unidad especializada de FQ de adultos.

      Material y métodos. Estudio prospectivo transversal sobre adultos con FQ en seguimiento en una consulta especializada. El grupo 1 realizó la transición y el grupo 2 fue transferido directamente. Se recogieron variables sociodemográficas, grado de conocimientos y habilidades, y estado emocional mediante una encuesta diseñada ad hoc (la validación de la consistencia interna fue parte del estudio) y la subescala emocional del Cuestionario Revisado de Calidad de Vida para FQ. Se compararon ambos grupos en la transición/transferencia y en el seguimiento, así como la evolución entre ambos momentos.

      Resultados. Se incluyeron 35 personas con FQ, 65,8% hombres y edad media 31,9 años (DE=10,1). En la transición, el grupo 1 (n=19; 54,3%) mostró mayores conocimientos sobre su medicación, aunque menores habilidades para gestionar citas y tomar decisiones que el grupo 2 en la transferencia. En la visita de seguimiento, el grupo 1 describió mejor estado emocional. Durante el seguimiento, el grupo 1 mejoró significativamente sus habilidades de gestión de citas, comunicación y toma de decisiones.

      Conclusiones. Los pacientes que transicionaron a una unidad de adultos de FQ conocían mejor sus medicamentos, mientras que los transferidos gestionaban mejor sus citas y la toma de decisiones, pero se sentían más tristes.

    • English

      Background. To analyze the knowledge, abilities, and emo-tional state of cystic fibrosis patients during a specific follow-up period and compare this with the recall they had of the transi-tion (planned and gradual shift from the pediatric unit) / transfer (direct change skipping the steps recommended by the guide-lines) to a specialized cystic fibrosis adult unit.Methods. Prospective cross-sectional study with cystic fibrosis adult patients under follow-up in a specialist consultation. Group 1 were patients who transitioned and Group 2 were transferred patients. The following information was collected: sociodemo-graphic variables, degree of knowledge, skills, and emotional state using a survey designed for this purpose (as part of the inter-nal consistency validation process). Participants also completed the emotional subscale of Cystic Fibrosis Questionnaire-Revised. Inter-group comparisons were made for the transition/transfer, at the follow-up, and during the evolution.Results. Thirty-five patients were analyzed; 65.8% male; mean age 31.9 years (SD =10.1). At the transition, Group 1 (n=19; 54.3%) had greater knowledge about their medication and reduced ability to manage appointments and making decisions in comparison to Group 2 at transfer. At follow-up, Group 1 made a better report on their emotional state and significantly improved their ability to manage appointments, communica-tion, and decision-making.Conclusions. Patients who were moved to an adult cystic fibro-sis unit through transition were more knowledgeable about their medications. However, those who were transferred managed their appointments and decision-making better, but felt sadder.

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