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

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.