Suppr超能文献

巴基斯坦医生对基因咨询服务的看法——未来会怎样?

The views of Pakistani doctors regarding genetic counseling services - is there a future?

作者信息

Ashfaq Myla, Amanullah Farhana, Ashfaq Ayesha, Ormond Kelly E

机构信息

Department of Pediatrics Division of Medical Genetics, The University of Texas Health Science Center at Houston, 6431 Fannin Street MSB 3.146B, Houston, TX, 77030, USA.

出版信息

J Genet Couns. 2013 Dec;22(6):721-32. doi: 10.1007/s10897-013-9578-2. Epub 2013 Mar 29.

Abstract

Pakistan is a densely populated country in South Asia with a high burden of genetic disease. A dearth of medical genetic services exists and master's level trained genetic counselors (GCs) are currently not a part of the healthcare system. This study is the first to determine the views of Pakistani medical doctors (MDs) towards genetic counseling services in Pakistan, including what manner a master's level genetic counselor might be incorporated into the healthcare system. Fifty-one MDs practicing in the city of Karachi completed a self-administered survey of twenty questions. Of the 49 respondents who answered a specific question, 100 % (49/49) felt that they would refer at least some, if not all, of their relevant patients to a genetic's clinic if one existed in Karachi. Overall, the respondents showed a positive attitude towards the provision of genetic counseling services as a part of the healthcare system of Pakistan. Some of the proposed roles identified specifically for GCs included: explaining how Down syndrome occurs (66.1 %), discussing genes associated with breast cancer (77.4 %), and explaining the inheritance pattern of β-thalassemia (65.5 %). In contrast, the review of medical and family history and discussion of medical procedures such as ultrasound and amniocentesis were typically seen as the role of a physician. A majority of the respondents (98 %) were in favor of premarital carrier screening for thalassemia and would refer patients to a GC to describe the importance of carrier screening (84.3 %) and to help explain carrier screening results (94.1 %). Many respondents selected GCs as the ideal provider of education and support for people with inherited conditions (43.8 %), followed by specialist MDs (26 %) and general physicians (22.9 %). Considering the high burden of genetic disease in the country, we encourage the development of genetic counseling services in Pakistan.

摘要

巴基斯坦是南亚一个人口密集的国家,遗传疾病负担沉重。该国缺乏医学遗传服务,目前拥有硕士水平的遗传咨询师尚未成为医疗保健系统的一部分。本研究首次确定了巴基斯坦医生对巴基斯坦遗传咨询服务的看法,包括硕士水平的遗传咨询师可能以何种方式纳入医疗保健系统。在卡拉奇市执业的51名医生完成了一项包含20个问题的自填式调查。在回答特定问题的49名受访者中,100%(49/49)认为,如果卡拉奇有遗传诊所,他们会将至少部分(如果不是全部)相关患者转诊至该诊所。总体而言,受访者对作为巴基斯坦医疗保健系统一部分提供遗传咨询服务持积极态度。专门为遗传咨询师确定的一些拟议角色包括:解释唐氏综合征的发病机制(66.1%)、讨论与乳腺癌相关的基因(77.4%)以及解释β地中海贫血的遗传模式(65.5%)。相比之下,对病史和家族史的回顾以及对超声和羊膜穿刺术等医疗程序的讨论通常被视为医生的职责。大多数受访者(98%)赞成婚前进行地中海贫血携带者筛查,并会将患者转诊给遗传咨询师,以说明携带者筛查的重要性(84.3%)并帮助解释携带者筛查结果(94.1%)。许多受访者选择遗传咨询师作为遗传性疾病患者理想的教育和支持提供者(43.8%),其次是专科医生(26%)和普通医生(22.9%)。鉴于该国遗传疾病负担沉重,我们鼓励在巴基斯坦发展遗传咨询服务。

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验