护理人员报告的症状负担和治疗目标的偏好在儿科原发性硬化性胆管炎中
Holly Payton Shifman1,2, Joanne Hatchett3, Ruth-Anne Pai3
1Department of Pediatrics, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Journal of pediatric gastroenterology and nutrition
|June 20, 2024
概括
儿科原发性硬化性胆管炎 (PSC) 显著影响儿童.
科学领域:
- 儿科胃肠病学 儿科胃肠病学
- 肝病学 肝病学是一种肝病学.
- 患者报告的结果
背景情况:
- 儿科原发性硬化胆炎 (PSC) 是一种罕见的慢性肝病.
- 对于儿科PSC患者的症状负担和生活质量,人们的了解有限.
研究的目的:
- 分析儿科PSC患者的症状负担和生活质量.
- 评估儿科PSC患者和护理人员参与临床试验的意愿和障碍.
主要方法:
- 分析了51名儿科PSC患者和护理人员的定性和定量调查数据.
- 使用了PSC合作伙伴患者登记-我们的声音调查.
主要成果:
- 常见的症状包括疲劳 (71%),腹痛 (69%) 和焦虑 (59%).
- 超过一半的患者/护理人员报告说,日常活动,社交生活和学校/工作受到限制.
- 尽管愿意,但没有参与者有过PSC药物试验的经验.
结论:
- 儿科PSC带来了显著的症状负担,影响了生活质量.
- 对于参与临床试验的儿科PSC患者存在障碍.
- 未来的研究应该优先考虑以患者为中心的终点,并改善儿科PSC的试验可访问性.
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