巴西唐氏综合征患者的生活质量:一个横截面研究
Beatriz Elizabeth Bagatin Veleda Bermudez1, Gustavo Leite Franklin2, Camila Maciel de Oliveira3
1Universidade Federal do Paraná, Hospital das Clínicas, Ambulatório da Síndrome de Down, Curitiba PR, Brazil.
Arquivos de neuro-psiquiatria
|November 30, 2023
概括
超过一半的唐氏综合征患者的生活质量很差. 诸如家长教育和早期医疗检查等因素可以改善这种情况,而自闭症和会使情况恶化.
科学领域:
- 医学研究 医学研究
- 遗传学 是一个遗传学.
- 公共卫生 公共卫生
背景情况:
- 唐氏综合征是发育迟缓和智力残疾的主要遗传原因.
- 影响大约700个活产中的1个,由于相关的健康问题影响生活质量.
研究的目的:
- 确定影响唐氏综合征患者生活质量的关键因素.
- 为临床实践和公共卫生战略提供信息.
主要方法:
- 评估了1187名唐氏综合征患者 (4岁以上) 的队列.
- 使用了经过验证的个人结果尺度的适应,采访了患者,家长和护理人员.
主要成果:
- 超过一半 (56.4%) 的样本报告生活质量不佳.
- 更好的生活质量与女性性别,早期医疗干预,更高的父母教育,母亲就业和产前护理有关.
- 更糟糕的生活质量与家庭史中滥用酒精,精神疾病和自闭症和等并发症有关.
结论:
- 临床并发症,特别是自闭症和,对患有唐氏综合征的个体造成重大负担.
- 家庭支持因素,包括父母的教育和就业,对生活质量产生积极影响.
- 医疗保健提供者和政策制定者应该解决这些生活质量决定因素.
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