息治疗在低患病率疾病中的至关重要的作用
Juan Esteban Correa-Morales1, Maria Alejandra Umbacia1, Catalina Martinez1
1Palliative care physician, Faculty of Medicine, Universidad de La Sabana, Colombia; Instituto Nacional de Cancerología, Colombia.
International journal of palliative nursing
|April 21, 2025
概括
息治疗对于管理复杂症状和为患有低流行病 (LPD) 的患者提供支持至关重要. 包括息治疗专家在内的多学科团队对于解决LPD患者及其家属的综合需求至关重要.
科学领域:
- 医学人文学科 医学人文学科
- 抚慰性护理医学 抚慰性护理医学
- 遗传学和基因组学 遗传学和基因组学
背景情况:
- 低发病率疾病 (LPD),也称为罕见或孤儿疾病,具有显著的死亡风险和症状负担.
- 诊断LPD往往是延迟的,有效的治疗选择有限或不存在.
研究的目的:
- 确定息治疗在诊断为患有低患病率疾病的患者治疗和随访中的作用.
- 探索息护理专家如何融入多学科的LPD管理团队.
主要方法:
- 使用SANRA (叙事评论文章评估规模) 方法进行了叙事评论.
- 一个多学科团队在主要数据库 (EMBASE,PubMed,科学网,CINAHL,OVID) 进行了全面的文献搜索.
- 包括专家评审的文章,重点关注息治疗在LPD多学科治疗中的作用.
主要成果:
- 息治疗专家对于在LPD患者中管理复杂的身体和情绪症状至关重要.
- 他们协助遗传咨询,预期调整和关于预后的决策.
- 为护理过渡,高级护理规划和家庭丧亲提供支持.
结论:
- 患有LPD的患者及其护理人员有复杂的需求,需要专门的评估.
- 息治疗专家和多学科医疗小组对于全面的LPD患者支持至关重要.
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