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What hinders congenital ectopia lentis patients' follow-up visits? A qualitative study.

ABSTRACT: 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.

SUBMITTER: Lin J

PROVIDER: S-EPMC7069255 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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What hinders congenital ectopia lentis patients' follow-up visits? A qualitative study.

Lin Jianqiang J Gong Ni N Cao Qianzhong Q Zhou Yijing Y Cai Yitingxue Y Jin Guangming G Young Charlotte Aimee CA Yang Jing J Wang Yiyao Y Zheng Danying D

BMJ open 20200312 3

<h4>Objectives</h4>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.<h4>Design</h4>Cross-sectional study; in-depth and face-to-face semistructured interview.<h4>Setting</h4>A large-scale ophthalmology hospital in China.<h4>Participants</h4>35 patients with CEL and their parents from May 2017 to August 2017.<h4>Main outcome measures</h4>Themes and categories. The interviews were a ...[more]

PMID: 32169922

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Project description:IntroductionCongenital ectopia lentis (CEL) is a rare ocular disease characterised by the dislocation or displacement of the lens. Patients with mild lens dislocations can be treated with conservative methods (eg, corrective eyeglasses or contact lenses). In contrast, patients with severe CEL usually require surgical management. However, few studies have focused on the visual prognosis and complications in conservative and surgical management of patients. This study aims to investigate the prognosis and complications in patients with CEL with conservative and surgical management, which is vital for CEL management, especially the choice of surgical timing and surgical method.Methods and analysisA cohort study will be conducted at Zhongshan Ophthalmic Center. We plan to recruit 604 participants diagnosed with CEL and aged ≥3 years old. Patients with mild lens subluxation and stable visual conditions will be included in the non-surgical group and follow-up at 1, 2 and 3 years after enrolment. Patients with severe lens subluxation who accept CEL surgery will be included in the surgical group. Different surgical techniques, including phacoemulsification, in-the-bag intraocular lens implantation (with or without capsular tension ring) and trans-scleral fixation, will be used depending on the severity of dislocation. Patients will be followed up at 3 months, and 1, 2 and 3 years postoperatively. Over a 5-year follow-up period, patients will receive a detailed ocular examination, including optometry, biological measurement, specular microscopy, ultrasound biomicroscopy, anterior segment and posterior segment optical coherence tomography (OCT), OCT angiography, echocardiography and questionnaires on vision-related quality of life. The primary outcome is the change of best-corrected visual acuity and the incidence of complications in both groups.Ethics and disseminationEthics approval was obtained from the ethics committee of the Zhongshan Ophthalmic Center (number: 2022KYPJ207). Study findings will be published in a peer-reviewed journal.Trial registration numberNCT05654025.

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What hinders congenital ectopia lentis patients' follow-up visits? A qualitative study.

Publications

What hinders congenital ectopia lentis patients' follow-up visits? A qualitative study.

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