儿科血液学家,状细胞疾病儿童及其家长之间的共同决策:一项探索性研究
Ricardo Wijngaarde1,2, Mijra Koning3, Karin Fijnvandraat4
1Department of Surgery, Amsterdam University Medical Centers, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands. r.o.wijngaarde@amsterdamumc.nl.
European journal of pediatrics
|October 31, 2023
概括
在儿科状细胞病 (SCD) 护理中,共享决策 (SDM) 显示了改善的潜力. 客观评估显示SDM水平低于主观报告,强调需要加强干预和培训.
科学领域:
- 儿科血液学 儿科血液学
- 以患者为中心的护理
- 健康 结果 研究 研究 结果
背景情况:
- 患有状细胞疾病 (SCD) 的儿童容易受到低于最佳的护理和健康结果.
- 共享决策 (SDM) 可以增强患者参与,改善儿科SCD护理的结果.
- 现有文献表明,对于SCD患者和家属的SDM有改进的余地,特别是关于跨文化挑战和风险沟通.
研究的目的:
- 评估儿科医生在多大程度上让SCD儿童及其父母参与共享决策.
- 客观地衡量患者参与SCD儿童治疗决策的程度.
- 将客观的SDM分数与患者,家长和儿科医生对SDM的主观看法进行比较.
主要方法:
- 观测性,横截面研究,涉及大学医院门诊的儿科SCD患者和家长.
- 咨询的音频录音被两个评估人员独立分析,使用OPTION-5仪器客观地评分SDM.
- 用SDM-Q-9和SDM-Q-Doc问卷评估了患者,家长和儿科医生对SDM的看法.
主要成果:
- 中位数OPTION-5得分 (目标SDM) 为25.0% (范围为0-55%),表明有很大的改进空间.
- 患者/家长的SDM评分中位数为56.7% (SDM-Q-9) 和儿科医生的68.9% (SDM-Q-Doc).
- 分析了24次涉及儿童SCD患者 (平均年龄9.4岁) 治疗决策的咨询.
结论:
- 虽然对SDM的主观看法是公平的,但客观测量表明需要加强儿科SCD护理.
- 干预措施应侧重于提高人们对SDM好处的认识,实施以儿童为中心的SDM战略,并为儿科医生提供SDM培训.
- 解决跨文化复杂性和改善风险沟通对于优化儿科SCD管理中的SDM至关重要.
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