最重要的是什么? 为遗传性智力障碍患者开发核心患者报告结果集:国际德尔菲研究
Nadia Y van Silfhout1,2,3,4,5, Maud M van Muilekom1,3,4,5, Leonie A Menke2,3,5
1Emma Children's Hospital, Department of Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam UMC Location University of Amsterdam, Amsterdam, the Netherlands.
Journal of intellectual disability research : JIDR
|January 28, 2026
概括
这项研究确定了19个关键的患者报告结果 (PROs) 对遗传智力障碍 (GID) 患者. 这一核心PRO集将通过标准化GID群体患者观点的测量来改善护理和研究.
科学领域:
- 遗传学和发育障碍 遗传学和发育障碍
- 患者报告的研究结果研究结果
- 改善医疗保健质量 改善医疗保健质量
背景情况:
- 改善遗传性智力障碍 (GID) 患者的护理和研究需要识别和测量相关的患者报告结果 (PRO).
- 当前的做法往往涉及测量许多可能与GID人口无关的PRO.
- 需要一种标准化的方法来有效地捕捉患者对健康状况的观点.
研究的目的:
- 确定GID患者最相关的PRO.
- 开发一套适用于整个GID人口的通用核心PRO集.
- 建立一个指导GID护理,研究和决策的框架.
主要方法:
- 一个全面的文献审查和定性研究确定了最初的PROs.
- 一个试点的通用核心 PRO 套件与专家小组一起开发.
- 进行了两轮的Delphi调查,对GID患者,护理人员和专家进行了调查.
- 为了最终确定PRO集,举行了共识会议.
主要成果:
- 共有61名参与者 (12名GID患者,21名护理人员,28名专家) 参与.
- 在最终的通用核心 PRO 集合上达成共识,其中包括 19 个 PRO.
- 这些PRO涵盖了各种领域,包括疲劳,睡眠,功能,生活质量,沟通和心理健康.
结论:
- 该研究成功地确定并建立了GID人群的相关核心PRO集.
- 这个GID核心PRO套件作为未来护理,研究和政策的关键框架.
- 下一步涉及选择和验证患者报告的结果措施 (PROM),以评估这些已识别的PRO.
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