印度尼西亚重型地中海贫血小儿患者的心理负担:综述

T. T. Sari, L. Rahmartani, Angga Wirahmadi, Nathasha Brigitta Selene, S. Iskandar, P. Wahidiyat
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引用次数: 0

摘要

地中海贫血症是一种导致贫血的常见遗传性血液疾病。它是一个重要的公共卫生问题,在东南亚和地中海国家发病率很高,可通过筛查计划加以预防。然而,由于重型地中海贫血症的慢性性质、永久性身体变化、麻烦的并发症和终身治疗,儿科重型地中海贫血症患者更容易出现精神障碍和认知障碍。地中海贫血症儿童患者的内化和外化问题较多。重型地中海贫血患儿的智商评分低于健康儿童。地中海贫血患儿的神经生理学和神经影像学检查结果显示异常。合并精神障碍会增加地中海贫血患者的死亡率、发病率和总医疗费用。因此,建议对精神健康问题进行常规评估,以便及早发现和及时治疗精神障碍。应为地中海贫血患者和家属提供多学科的治疗方法,包括提供适当的医疗护理、社会心理支持和良好的过渡护理,以提高生存率和幸福感,协助良好的社会融合和日常功能,并应对慢性疾病带来的压力。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Psychological Burden among Pediatric Thalassemia Major Patients in Indonesia: A Review
Thalassemia a common hereditary blood disorder resulting in anemia. It is an important public health problem, with a high prevalence in Southeast Asia and Mediterranean countries, and preventable through screening programs. However, due to its chronic nature, permanent physical changes, troublesome complications, and lifelong treatment, pediatric patients with thalassemia major are more prone to mental disorders and cognitive impairment. Internalizing and externalizing problems are higher in pediatric patients with thalassemia. Children with β-thalassemia major exhibit lower IQ scores than healthy children. Neurophysiology and neuroimaging examinations have shown abnormal results in children with thalassemia. Co-morbidity with mental disorders increases the mortality, morbidity, and total healthcare costs of patients with thalassemia. Therefore, routine evaluation of mental health problems is recommended to accommodate the early detection and prompt treatment of mental disorders. A multidisciplinary approach for thalassemia patients and families should be delivered by providing appropriate medical care, psychosocial support, and good transition care to improve survival and well-being, assist good social integration and daily functioning, and cope with the stress of chronic disease.
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