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在罕见内分泌疾病的成功过渡:在法国参考中心的患者经验
Karine Aouchiche1,2, Thierry Brue2,3, Emeline Marquant1
1Department of Paediatrics, Assistance Publique-Hôpitaux de Marseille (APHM), Paediatric Endocrinology Unit, CHU Timone Enfants, Marseille, France.
Clinical endocrinology
|August 19, 2025
概括
一个联合的儿科和成人内分泌咨询改善了罕见内分泌疾病患者的医疗保健过渡,显示出高满意度和持续的成人护理. 关键问题包括医疗信息传输,建议个性化途径和更多的联合咨询.
科学领域:
- 内分泌学 在内分泌学.
- 儿科到成人医疗保健的过渡
- 罕见内分泌疾病 罕见内分泌疾病
背景情况:
- 对于患有罕见内分泌疾病的患者来说,从儿科到成人护理的有效过渡至关重要.
- 以前的过渡模式可能无法充分满足这一群体的独特需求.
研究的目的:
- 为了评估患者的经验与联合儿科-成人内分泌咨询医疗保健过渡.
- 评估患者的随访率,满意度,困难和期望.
主要方法:
- 开发了一份医疗保健过渡问卷,并给患者使用.
- 收集的数据集中在过渡后几年的经验上.
主要成果:
- 在115名患有罕见内分泌疾病的患者中,观察到高持续率 (96%) 和随访率 (75%).
- 89%的受访者表示满意,64%的受访者表示没有任何困难.
- 心理,后勤和医疗问题是常见的困难;医疗信息传输是一个关键问题.
结论:
- 儿科和成人联合咨询为罕见内分泌疾病患者的成功医疗过渡提供便利.
- 患者的高满意度和长期随访表明了这种模式的有效性.
- 解决患者发现的困难和实施个性化策略对于优化过渡期护理至关重要.
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