了解1型糖尿病患者对自身抗体查的知识和态度:简要报告
Caitlin S Kelly1, Wendy A Wolf2, Emilee M Cornelius2
1T1D Exchange, 101 Federal St Suite 440, Boston, MA, 02110, USA. ckelly@t1dexchange.org.
概括
1型糖尿病 (T1D) 自体抗体查识别了有风险的个体,但现实世界的参与和知识仍然很低. 需要更容易获取的信息和共享的经验,以鼓励那些可能受益的人进行查.
科学领域:
- 内分泌学 在内分泌学.
- 免疫学 免疫学 免疫学
- 遗传学 是一个遗传学.
背景情况:
- 通过小岛特异性自身抗体进行1型糖尿病 (T1D) 查,可以识别有风险的个体.
- 全国范围内鼓励对T1D自身抗体进行查,但参与率和公众理解程度尚未得到充分记录.
- 关于T1D自身抗体查的现实世界知识和看法需要进一步调查.
研究的目的:
- 评估有关T1D自身抗体查的知识,经验和态度.
- 了解个人或家族有T1D病史的个人的查参与.
- 确定影响T1D自身抗体查决策的因素.
主要方法:
- 对来自T1D交换登记处的510名成年人进行了调查,这些成年人有T1D的个人或家族病史.
- 参与者被分为三组:T1D的成人和没有T1D的儿童 (PWDs),没有T1D的父母与有T1D和没有T1D的孩子 (照顾者) 以及T1D患者的第一级亲属 (亲属).
- 自我报告的自身抗体查知识,经验和态度的描述性分析.
主要成果:
- 参与者普遍认为自己对自身抗体查有所了解,并持有积极的整体看法.
- 观察到低查率:21.94%的PWD,46.30%的护理人员查他们的孩子没有T1D,和19.23%的亲戚查自己.
- 许多参与者对查仍然犹不决,决策影响因群体而异;自主发起的研究在PWD和护理人员中很常见,而亲属通常没有考虑查.
- 那些接受查的人报告了积极的经历.
结论:
- 在对T1D自身抗体查的一般积极看法和实际参与之间存在很大的差距.
- 可访问的信息和现实世界的经验对于解决犹和促进查至关重要.
- 有针对性的宣传可能是必要的,以增加风险人群中查的普及率.
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