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血红蛋白病新生儿筛查知识的医生。

Hemoglobinopathy newborn screening knowledge of physicians.

机构信息

Department of Health Genetics Program, Children With Special Needs Branch, Hawai'i Department of Health, Honolulu, Hawai'i 96816, USA.

出版信息

Am J Prev Med. 2011 Dec;41(6 Suppl 4):S384-9. doi: 10.1016/j.amepre.2011.09.005.

DOI:10.1016/j.amepre.2011.09.005
PMID:22099362
Abstract

BACKGROUND

Hawai'i has a diverse population, including many individuals of Asian descent. A relatively high proportion of Hawai'i infants are born with inherited hemoglobinopathies; about 2% have α-thalassemia trait. The Hawai'i Genetics Program engages in genetics services and public health activities, including a hemoglobinopathy clinic and provider education.

PURPOSE

This study was undertaken to assess baseline pediatrician hemoglobinopathy knowledge that would then inform the development of education programs.

METHODS

In 2008-2009, a brief survey assessed Hawai'i pediatrician hemoglobinopathy and newborn screening (NBS) knowledge. To place results in context, pediatricians in San Francisco (SF) and Salt Lake City (SLC) (similar and different patient demographics, respectively) were surveyed; 660 surveys were mailed to pediatricians from the NBS Program database (Hawai'i) or telephone listings (SF and SLC). Results were analyzed in 2011. Total and individual knowledge scores were calculated based on four questions.

RESULTS

Overall, 226 (34%) pediatricians responded: 113 from Hawai'i, 54 from SF, and 59 from SLC (45%, 23%, and 34% response rates, respectively). Overall, 89.4% of participants had either good or perfect knowledge scores: 16% of participants had attended a hemoglobinopathy educational session in the past 6 months; 32.4% give iron to all anemic patients; 29% reported that β-thalassemia is not detected by NBS, and 8% were unsure. Results identified significant knowledge differences regarding sickle cell disease and whether or not a complete blood count diagnoses α-thalassemia.

CONCLUSIONS

Knowledge gaps between and within the pediatrician populations present opportunities for education regarding hemoglobinopathies and NBS panels. The results will inform the development of hemoglobinopathy education materials to assure a knowledgeable healthcare workforce in the growing area of genetics and newborn screening.

摘要

背景

夏威夷拥有多元化的人口,其中包括许多亚洲血统的人。夏威夷有相当高比例的婴儿出生时就患有遗传性血红蛋白病;约有 2%的人患有α-地中海贫血。夏威夷遗传学计划从事遗传服务和公共卫生活动,包括血红蛋白病诊所和提供者教育。

目的

本研究旨在评估儿科医生的血红蛋白病基本知识,以便为教育计划的制定提供信息。

方法

在 2008-2009 年,一项简短的调查评估了夏威夷儿科医生对血红蛋白病和新生儿筛查(NBS)的知识。为了将结果置于上下文中,旧金山(SF)和盐湖城(SLC)的儿科医生进行了调查(分别具有相似和不同的患者人群);从 NBS 计划数据库(夏威夷)或电话名录(SF 和 SLC)向儿科医生邮寄了 660 份调查问卷。结果于 2011 年进行分析。根据四个问题计算了总得分和个人得分。

结果

总体而言,226 名(34%)儿科医生做出了回应:113 名来自夏威夷,54 名来自旧金山,59 名来自盐湖城(分别为 45%、23%和 34%的回应率)。总体而言,89.4%的参与者得分较好或完美:16%的参与者在过去 6 个月内参加过血红蛋白病教育课程;32.4%的人会给所有贫血患者补铁;29%的人报告说 NBS 无法检测到β-地中海贫血,8%的人不确定。研究结果发现,在镰状细胞病以及全血细胞计数是否诊断α-地中海贫血方面,儿科医生群体之间和内部存在明显的知识差距。

结论

儿科医生群体之间和内部存在知识差距,这为血红蛋白病和 NBS 面板提供了教育机会。结果将为血红蛋白病教育材料的制定提供信息,以确保在不断发展的遗传学和新生儿筛查领域拥有知识渊博的医疗保健人员。

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