患者支持小组使用遗传咨询师
Sadie Roulston1, Karen Raraigh2, Amy Malinowski3
1Division of Human Genetics, Department of Pediatrics, University of Maryland School of Medicine, Baltimore, Maryland, USA.
Journal of genetic counseling
|July 8, 2023
概括
大多数遗传支持组织与遗传咨询师合作,满意度通常很高. 然而,资金和获取方面的挑战限制了这些重要遗传服务的进一步利用.
科学领域:
- 基因咨询 基因咨询
- 患者支持小组 患者支持小组
- 医疗保健服务研究 医疗服务研究
背景情况:
- 患者支持小组和遗传咨询师合作的理论好处得到了认可.
- 缺乏关于这种合作的范围和性质的经验数据.
研究的目的:
- 量化患者支持组织使用遗传咨询师的比例.
- 确定如何利用遗传咨询师以及对这些关系的满意度.
- 探索影响合作的因素和增加利用的障碍.
主要方法:
- 对遗传支持组织的领导人进行了一项调查.
- 该调查评估了与遗传咨询师的关系,利用模式和满意度水平.
- 统计分析,包括千二测试,用于评估关系和满意度.
主要成果:
- 64.8%的受访组织报告与遗传咨询师建立了关系.
- 关系在拥有全职员工,研究重点或多样化服务的组织中更为常见.
- 遗传咨询师被用作演讲者,用于患者询问,以及专家小组.
- 对现有关系的满意度明显高于不满意度 (p < 0.001).
结论:
- 虽然协作和满意度通常很高,但增加利用存在重大障碍.
- 缺乏资金和获得遗传咨询师的机会是关键的限制.
- 未来的努力应集中在改善获取,推广和资金,以加强遗传咨询师在患者支持部门的整合.
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