在pegvaliase旅程期间管理焦虑的最佳实践建议
Kendra J Bjoraker1, Caroline Eggerding2, Elisheva Ellenberg3
13:1 Neuropsychology Consultants, PLLC, Minneapolis, MN, USA.
Molecular genetics and metabolism
|December 3, 2023
概括
这项研究提供了最佳实践建议,用于管理受酶酶治疗的基尿症 (PKU) 患者的焦虑. 医疗保健提供者可以使用这些指南来解决患者在整个治疗过程中的焦虑.
科学领域:
- 生物化学 生物化学
- 药理学 药理学是指药理学的学科.
- 遗传学 遗传学 是一个
背景情况:
- 基尿症 (PKU) 是一种代谢障碍,需要酶替代疗法,例如 pegvaliase.
- 患有PKU的患者可能会因疾病本身和二酶治疗方面的因素而感到焦虑.
- 焦虑管理对于成功坚持佩格瓦里酶治疗和患者福祉至关重要.
研究的目的:
- 建立最佳实践建议,用于识别和管理考虑接受或接受二酶治疗的患者的焦虑.
- 为医疗保健专业人员提供一个框架,以解决病治疗的所有阶段的焦虑.
- 为了改善患者经验和PKU管理期间的结果,用Pegvaliase.
主要方法:
- 采用了经过修改的Delphi方法,涉及一个多学科专家小组.
- 在面对面的会议之前,调查被用来收集专家和患者的初步建议.
- 对于所有制定的建议,寻求达成≥75%的共识.
主要成果:
- 建立了28个最佳实践建议,用于在 pegvaliase 治疗的预治疗,诱导和维护阶段管理焦虑.
- 策略解决了常见的焦虑触发因素:自我注射,副作用,定位,饮食改变和有效时间.
- 有效的焦虑管理包括以患者为中心的沟通,共享决策和个性化治疗.
结论:
- 这些建议指导医疗保健提供者主动管理与二酶治疗相关的焦虑.
- 这些指导方针支持在焦虑个体中启动和持续管理佩格瓦里亚酶.
- 积极的焦虑管理可以增强PKU患者的治疗过程.
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