Investigation and Analysis of the Current Status of Health-Related Quality of Life in Adolescents with Hemophilia in Hubei Province.

IF 1 4区 医学 Q3 MEDICINE, GENERAL & INTERNAL
Xiuli Qin, Ai Zhang, Xin Zhao, Ting Zhou, Zhili Xia, Genzhen Yu
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引用次数: 0

Abstract

Aims/Background Reliable health-related quality of life data are critical in developing countries, in order to advocate for government agencies to develop national hemophilia care programmes. This study aims to explore the current status and influencing factors of health-related quality of life among adolescents with hemophilia in Hubei Province, so as to provide empirical data for professionals. Methods A total of 84 children with hemophilia aged 8 to 18, who were registered in Tongji Hemophilia Treatment Center and Hubei Hemophilia Home, were selected using a cluster sampling method. The "General Situation Questionnaire of Hemophiliac Adolescents", designed by Tongji Hemophilia Treatment Center, and "the Chinese version of Canadian hemophilia outcomes-kid's life assessment tool (CHO-KLAT)", were used for this study conducted from June 1, 2022 to December 30, 2022. Results 82 completed questionnaires were included. The average age of the 82 adolescents was 13.04 ± 3.29 years and all were males. Among them, 67 were hemophilia A and 15 were hemophilia B. 61 cases were severe type, 19 were moderate type and 2 cases were mild type. The average total score of the CHO-KLAT for adolescents with hemophilia in Hubei Province was 49.49, which was lower than their counterparts in developed countries. The statistically significant influencing factors included residence, annual family income, and disease type. Conclusion This study provides empirical data support for the health management of adolescents with hemophilia, highlighting the importance of improving medical resource access, transfusion convenience, and psychological support in enhancing the quality of life for this group. The results emphasize the need for healthcare systems and policymakers to take specific measures to address these factors to improve the treatment and care conditions for adolescents with hemophilia.

湖北省血友病青少年健康相关生活质量现状调查分析》。
目的/背景 可靠的健康相关生活质量数据在发展中国家至关重要,有助于政府机构制定国家血友病护理计划。本研究旨在探讨湖北省血友病青少年健康相关生活质量的现状及影响因素,为专业人士提供实证数据。方法 采用整群抽样法,选取同济血友病治疗中心和湖北省血友病之家登记在册的 84 名 8-18 岁血友病患儿为研究对象。本研究采用同济血友病治疗中心设计的 "血友病青少年一般情况调查表 "和 "加拿大血友病结局-儿童生活评估工具(CHO-KLAT)中文版",研究时间为2022年6月1日至2022年12月30日。结果 82 份完成的问卷被纳入其中。82 名青少年的平均年龄为(13.04±3.29)岁,均为男性。其中,67 例为 A 型血友病,15 例为 B 型血友病,61 例为重度血友病,19 例为中度血友病,2 例为轻度血友病。湖北省血友病青少年的CHO-KLAT平均总分为49.49分,低于发达国家。具有统计学意义的影响因素包括居住地、家庭年收入和疾病类型。结论 本研究为血友病青少年的健康管理提供了实证数据支持,强调了改善医疗资源获取、输血便利性和心理支持对提高该群体生活质量的重要性。研究结果强调,医疗系统和政策制定者有必要针对这些因素采取具体措施,以改善血友病青少年的治疗和护理条件。
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来源期刊
British journal of hospital medicine
British journal of hospital medicine 医学-医学:内科
CiteScore
1.50
自引率
0.00%
发文量
176
审稿时长
4-8 weeks
期刊介绍: British Journal of Hospital Medicine was established in 1966, and is still true to its origins: a monthly, peer-reviewed, multidisciplinary review journal for hospital doctors and doctors in training. The journal publishes an authoritative mix of clinical reviews, education and training updates, quality improvement projects and case reports, and book reviews from recognized leaders in the profession. The Core Training for Doctors section provides clinical information in an easily accessible format for doctors in training. British Journal of Hospital Medicine is an invaluable resource for hospital doctors at all stages of their career. The journal is indexed on Medline, CINAHL, the Sociedad Iberoamericana de Información Científica and Scopus.
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