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父母对地中海贫血的认知以及与拒绝为子女进行筛查相关的因素。

Parental Knowledge on Thalassaemia and Factors Associated with Refusal to Screen Their Children.

作者信息

Mat Mohammad Azmi Che, Yaacob Lili Husniati, Zakaria Rosnani

机构信息

Department of Family Medicine, Universiti Sains Malaysia, Kubang Kerian, Kelantan, Malaysia.

出版信息

Malays J Med Sci. 2020 Feb;27(1):124-133. doi: 10.21315/mjms2020.27.1.13. Epub 2020 Feb 27.

Abstract

INTRODUCTION

Acceptance of a screening programme for thalassemia is important in managing the disease and its associated complications. The objective of this study was to determine the knowledge of thalassemia and factors associated with thalassemia screening refusal among parents of secondary school children.

METHODS

This cross-sectional study was carried out from May 2017 to October 2017 among parents of fourth form students in three schools in Besut, Terengganu, Malaysia. Parents who are able to read and understand Malay and consented to the study were required to answer a validated questionnaire on their knowledge regarding thalassemia. They were also asked the reason for their acceptance or refusal of the thalassemia screening of their children.

RESULTS

In total, 273 participants took part in the study. The mean thalassemia knowledge score was 11.8 out of a maximum score of 21. Low knowledge scores (adjusted odds ratio [adj OR] 0.87; 95% confidence interval [CI]: 0.79, 0.95; = 0.002) and female sex (adj OR 2.60; 95% CI: 1.04, 6.53; = 0.040) had significant associations with parental thalassemia screening refusal. The main reason for screening refusal was that parents perceived that their children were not at risk for the disease since they did not have a family member with thalassemia.

CONCLUSION

The mean thalassemia knowledge score among parents remains unsatisfactory. A high knowledge score is important since it is associated with parental acceptance of thalassemia screening for their children.

摘要

引言

接受地中海贫血筛查项目对于控制该疾病及其相关并发症至关重要。本研究的目的是确定中学生家长对地中海贫血的了解程度以及与拒绝地中海贫血筛查相关的因素。

方法

这项横断面研究于2017年5月至2017年10月在马来西亚登嘉楼州贝苏特的三所学校中对四年级学生的家长进行。要求能够阅读和理解马来语并同意参与研究的家长回答一份关于他们对地中海贫血知识的有效问卷。他们还被问及接受或拒绝孩子进行地中海贫血筛查的原因。

结果

共有273名参与者参加了该研究。地中海贫血知识的平均得分在满分21分中为11.8分。知识得分低(调整后的优势比[adj OR]为0.87;95%置信区间[CI]:0.79,0.95;P = 0.002)和女性性别(adj OR为2.60;95% CI:1.04,6.53;P = 0.040)与家长拒绝地中海贫血筛查有显著关联。拒绝筛查的主要原因是家长认为他们的孩子没有患该病的风险,因为他们没有患地中海贫血的家庭成员。

结论

家长的地中海贫血知识平均得分仍不尽人意。高知识得分很重要,因为它与家长接受孩子进行地中海贫血筛查有关。

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