Coca Barbado Amalia, Zamarrón de Lucas Ester, Álvarez-Sala Walther Rodolfo, Prados Sánchez María Concepción
Universidad Autónoma de Madrid. Facultad de Medicina y Cirugía. Departamento de Medicina. Madrid. España..
Servicio Madrileño de Salud. Hospital Universitario la Paz. Servicio de Neumología. Madrid. España..
An Sist Sanit Navar. 2024 Aug 26;47(2):e1084. doi: 10.23938/ASSN.1084.
To analyze the knowledge, abilities, and emotional state of cystic fibrosis patients during a specific follow-up period and compare this with the recall they had of the transition (planned and gradual shift from the pediatric unit) / transfer (direct change skipping the steps recommended by the guidelines) to a specialized cystic fibrosis adult unit.
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: sociodemographic variables, degree of knowledge, skills, and emotional state using a survey designed for this purpose (as part of the internal 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.
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, communication, and decision-making.
Patients who were moved to an adult cystic fibrosis unit through transition were more knowledgeable about their medications. However, those who were transferred managed their appointments and decision-making better, but felt sadder.
分析囊性纤维化患者在特定随访期间的知识、能力和情绪状态，并将其与他们对从儿科病房过渡（计划中的逐步转变）/转科（直接跳过指南推荐步骤的直接变更）到专门的成人囊性纤维化病房的回忆进行比较。
对在专科门诊接受随访的成年囊性纤维化患者进行前瞻性横断面研究。第1组为过渡患者，第2组为转科患者。收集以下信息：社会人口统计学变量、使用为此目的设计的调查问卷（作为内部一致性验证过程的一部分）得出的知识程度、技能和情绪状态。参与者还完成了《囊性纤维化问卷修订版》的情绪分量表。对过渡/转科、随访期间和病情发展过程中的组间情况进行比较。
分析了35例患者；男性占65.8%；平均年龄31.9岁（标准差=10.1）。在过渡时，与第2组转科时相比，第1组（n = 19；54.3%）对其药物的了解更多，但安排预约和做决定的能力较低。在随访时，第1组对其情绪状态的报告更好，并且安排预约、沟通和做决定的能力显著提高。
通过过渡转到成人囊性纤维化病房的患者对其药物了解更多。然而，那些转科的患者安排预约和做决定的能力更强，但感觉更悲伤。
