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本文引用的文献

1
Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000-2021: a systematic analysis from the Global Burden of Disease Study 2021.全球、区域和国家镰状细胞病的患病率和死亡负担,2000-2021 年:2021 年全球疾病负担研究的系统分析。
Lancet Haematol. 2023 Aug;10(8):e585-e599. doi: 10.1016/S2352-3026(23)00118-7. Epub 2023 Jun 15.
2
Knowledge and awareness of sickle cell disease: a cross sectional study amongst unmarried adults in Nigeria's capital city.镰状细胞病的知识与认知:对尼日利亚首都城市未婚成年人的横断面研究
J Community Genet. 2022 Dec;13(6):579-585. doi: 10.1007/s12687-022-00607-x. Epub 2022 Sep 28.
3
Attitudes and practices of unmarried adults towards sickle cell disease: emergent factors from a cross sectional study in Nigeria's capital.未婚成年人对镰状细胞病的态度和做法:尼日利亚首都一项横断面研究中的新兴因素。
Hematology. 2022 Dec;27(1):488-493. doi: 10.1080/16078454.2022.2059629.
4
Sickle cell disease in India: a scoping review from a health systems perspective to identify an agenda for research and action.印度镰状细胞病:从卫生系统视角出发的范围综述,旨在确定研究和行动议程。
BMJ Glob Health. 2021 Feb;6(2). doi: 10.1136/bmjgh-2020-004322.
5
Improving the Capacity of Health System and Community for Sickle Cell Disease Screening and Management Among Tribal Population in India: Protocol of an Intervention Study.提高印度部落人口镰状细胞病筛查与管理的卫生系统和社区能力:一项干预研究方案
Curr Health Sci J. 2020 Jul-Sep;46(3):270-279. doi: 10.12865/CHSJ.46.03.08. Epub 2020 Sep 30.
6
Knowledge, awareness, and attitude of premarital screening with special focus on sickle cell disease: a study from Odisha.婚前筛查的知识、意识和态度,特别关注镰状细胞病:一项来自奥里萨邦的研究
J Community Genet. 2020 Oct;11(4):445-449. doi: 10.1007/s12687-020-00471-7. Epub 2020 Jun 18.
7
Knowledge, beliefs, attitudes, and behaviors regarding sickle cell disease: Implications for prevention.关于镰状细胞病的知识、信念、态度和行为:对预防的启示。
Soc Work Public Health. 2018;33(5):299-316. doi: 10.1080/19371918.2018.1469064. Epub 2018 May 16.
8
Knowledge, perception and practices towards sickle cell disease: a community survey among adults in Lubaga division, Kampala Uganda.对镰状细胞病的认识、看法和做法:乌干达坎帕拉卢巴加区成年人的社区调查。
BMC Public Health. 2018 Apr 27;18(1):561. doi: 10.1186/s12889-018-5496-4.
9
Situational Analysis of Sickle Cell Disease in Gujarat, India.印度古吉拉特邦镰状细胞病的情况分析
Indian J Community Med. 2017 Oct-Dec;42(4):218-221. doi: 10.4103/ijcm.IJCM_284_16.
10
Knowledge and Health Beliefs Regarding Sickle Cell Disease Among Omanis in a Primary Healthcare Setting: Cross-sectional study.初级卫生保健环境中阿曼人对镰状细胞病的认知与健康信念:横断面研究
Sultan Qaboos Univ Med J. 2016 Nov;16(4):e437-e444. doi: 10.18295/squmj.2016.16.04.006. Epub 2016 Nov 30.

古吉拉特邦乔陶德布尔地区部落社区镰状细胞病知识的终期评估。

Endline assessment of knowledge about sickle cell disease among the tribal community of Chhotaudepur district of Gujarat.

作者信息

Surti Shaily B, Parmar Ankita, Babu Bontha V, Patel Geetika M, Godara Naresh, Mishra Umang, Patel Shubhangi

机构信息

Department of Preventive and Social Medicine, Parul Institute of Medical Sciences and Research, Parul University, Vadodara, Gujarat, India.

Department of Preventive and Social Medicine, GMERS Medical College and General Hospital, Rajpipla, Gujarat, India.

出版信息

J Community Genet. 2024 Apr;15(2):187-194. doi: 10.1007/s12687-024-00699-7. Epub 2024 Feb 9.

DOI:10.1007/s12687-024-00699-7
PMID:38334932
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11031518/
Abstract

Sickle cell disease (SCD) is a significant public health concern in India, with one of the highest disability burdens worldwide. For the success of the disease prevention and control program that aims to reduce prevalence through health promotion and screening, the public's prior knowledge of the disease is important. Hence, this study was conducted to assess baseline knowledge of the disease and effects of health education and community mobilization program in the SCD endemic tribal community of Gujarat. This quasi-experimental study was conducted in three phases at Chhotaudepur district of Gujarat, India. Knowledge of the community was assessed through the administration of pretested quantitative questionnaire in 1646 and 1631 individuals respectively during formative and evaluation phases. Differences between the proportions of two phases were statistically assessed by chi-square tests. Despite 75.3% of respondents having heard of SCD before, only 20% could perceive the correct cause. It was improved by 42% post-intervention. During the evaluation, 83% respondents recognized the most common symptom of extreme pain, whereas 86.8% identified the correct diagnostic method. Seventy-seven percent respondents reported modern medicine as a treatment for SCD at endline. Knowledge and awareness about SCD were found inadequate in the community. However, health education intervention strategies effectively improved knowledge related to the disease and its causes, diagnosis, and treatment. Hence, urgent action is required to incorporate community mobilization and awareness generation strategies to mitigate the disease burden.

摘要

镰状细胞病(SCD)是印度一个重大的公共卫生问题,其残疾负担在全球位居前列。对于旨在通过健康促进和筛查来降低患病率的疾病预防与控制项目而言,公众对该疾病的预先了解至关重要。因此,本研究旨在评估古吉拉特邦SCD流行部落社区对该疾病的基线认知以及健康教育和社区动员项目的效果。这项准实验研究在印度古吉拉特邦的乔陶德布尔区分三个阶段进行。在形成阶段和评估阶段,分别通过对1646名和1631名个体进行预先测试的定量问卷调查来评估社区的认知情况。通过卡方检验对两个阶段比例的差异进行统计学评估。尽管75.3%的受访者之前听说过SCD,但只有20%能够正确知晓其病因。干预后这一比例提高了42%。在评估期间,83%的受访者认识到最常见的极度疼痛症状,而86.8%的受访者确定了正确的诊断方法。在末期,77%的受访者报告现代医学是SCD的一种治疗方法。研究发现社区对SCD的认知和 awareness 不足。然而,健康教育干预策略有效地提高了与该疾病及其病因、诊断和治疗相关的知识。因此,需要采取紧急行动纳入社区动员和提高 awareness 策略,以减轻疾病负担。 (注:原文中“awareness”未翻译完整,推测可能是“意识”之类的词,具体需结合完整语境确定准确意思)