希尔施普朗格病患者的过渡期护理:那些被遗弃的人
David S Thompson1, Joseph R Davidson1, Kathryn E Ford1
1Department of Neonatal and Paediatric Surgery, Great Ormond Street Hospital for Children, London, United Kingdom.
患有赫什普朗格病的成年患者在儿科护理后经常经历肠道功能和生活质量的恶化. 改善过渡期护理对于那些病情严重影响退院后生活的人来说至关重要.
科学领域:
- 胃肠病学 胃肠病学
- 儿科手术 儿科手术
- 成年人的先天性心脏病
背景情况:
- 希尔施普朗格病具有可变的长期影响.
- 了解成年人面临的挑战可以为过渡期护理提供信息.
研究的目的:
- 探索成年希尔施普朗格患者的结果.
- 评估过渡期护理经验.
主要方法:
- 在一个单一中心进行队列研究.
- 接受调查的成年患者接受了希尔施普隆 (1977-2001) 治疗.
- 评估过渡期护理状态,肠道功能和生活质量.
主要成果:
- 20/139名患者接受过渡护理;这些患者的治疗结果较差.
- 17%的人在出院时经历了污染;只有7人接受过渡性护理.
- 儿科出院后,一些患者的肠道功能恶化.
结论:
- 相当一部分的希尔施普朗格患者面临着持续的肠道问题.
- 需要更好地对过渡期护理进行分层.
- 清晰的出院后护理途径至关重要.
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