阻碍先天性晶状体异位患者随访的因素是什么？一项定性研究。
What hinders congenital ectopia lentis patients' follow-up visits? A qualitative study.
机构信息
State Key Laboratory of Ophthalmology, Zhongshan Ophthalmic Center, Sun Yat-Sen University, Guangzhou, Guangdong, China.
School of Nursing, Sun Yat-Sen University, Guangzhou, China.
出版信息
BMJ Open. 2020 Mar 12;10(3):e030434. doi: 10.1136/bmjopen-2019-030434.
OBJECTIVES
The aim of our study is to give insight into congenital ectopia lentis (CEL) patients' care-seeking behaviour and explore the factors affecting their follow-up visits.
DESIGN
Cross-sectional study; in-depth and face-to-face semistructured interview.
SETTING
A large-scale ophthalmology hospital in China.
PARTICIPANTS
35 patients with CEL and their parents from May 2017 to August 2017.
MAIN OUTCOME MEASURES
Themes and categories. The interviews were audio-recorded, transcribed verbatim, coded and analysed using grounded theory. Data collection was closed when new themes did not emerge in subsequent dialogues.
RESULTS
The factors affecting the timely visits included insufficient awareness of CEL, shame on hereditary disease, lack of effective doctor-patient communication, lack of reliable information online and daily stressors.
CONCLUSION
Continuing medical education of severe and rare disease, reforming the pattern of medical education, constructing an interactive platform of the disease on the internet and improving healthcare policy are effective ways to improve the diagnosis and treatment status of CEL in China.
目的
本研究旨在深入了解先天性晶状体异位（CEL）患者的求医行为，并探讨影响其随访的因素。
设计
横断面研究；深入和面对面的半结构化访谈。
地点
中国一家大型眼科医院。
参与者
2017 年 5 月至 8 月，35 名 CEL 患者及其家长。
主要观察指标
主题和类别。对访谈进行录音、逐字转录、编码，并使用扎根理论进行分析。后续对话中不再出现新主题时，数据收集结束。
结果
影响及时就诊的因素包括对 CEL 的认识不足、对遗传性疾病的羞耻感、医患沟通不畅、缺乏可靠的在线信息和日常压力。
结论
继续对严重和罕见疾病进行医学教育、改革医学教育模式、构建疾病互联网互动平台、完善医疗保健政策，是改善中国 CEL 诊治状况的有效途径。
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