患者的知识,态度和实践患有状细胞疾病在一个特有区域的病人
Garima Nirmal1, Dinesh Pendharkar2, Neha Gupta2
1Departments of Pediatric Oncology, Haemato-Oncology.
Journal of pediatric hematology/oncology
|January 10, 2025
概括
状细胞疾病 (SCD) 的知识很少,但氧尿素粘附率很高. 患者教育和咨询对于改善SCD患者的护理和治疗结果至关重要.
科学领域:
- 血液学 血液学 血液学
- 遗传学 是一个遗传学.
- 公共卫生 公共卫生
背景情况:
- 状细胞疾病 (SCD) 是一种重要的遗传性血液疾病,导致大量的发病率和死亡率.
- 了解患者和监护人的知识,态度和做法对于有效的疾病管理至关重要.
研究的目的:
- 评估患者和监护人的关于状细胞疾病的知识,态度和实践 (KAP).
- 发现了解SCD的性质,预防和治疗选择的差距.
主要方法:
- 进行了一项横截面研究,涉及被诊断患有SCD的患者.
- 在参与者及其监护人中使用预先测试的问卷来评估KAP.
主要成果:
- 只有37%的参与者知道SCD可以预防,17%的人知道移植是治疗方法.
- 基尿素的坚持率特别高 (72%没有错过剂量),与不规则的调查后续调查 (78%) 相反.
- 大多数患者在过去一年中经历了疼痛 (52%) 和疲劳 (84%),其中大多数人向当地医生寻求护理.
结论:
- 患者/监护人对SCD预防,查和治疗选择的知识存在重大差距.
- 对基尿素治疗的高度坚持是一个积极的发现,表明患者的良好遵守.
- 加强患者和家庭教育,以及咨询,对于改善整体SCD管理和结果至关重要.
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