Southwest Hospital/Southwest Eye Hospital, Third Military Medical University (Amy Medical University), Chongqing, China.
Key Lab of Visual Damage and Regeneration & Restoration of Chongqing, Chongqing, China.
BMJ Open. 2019 Sep 3;9(9):e031020. doi: 10.1136/bmjopen-2019-031020.
This study aimed to investigate the experience of patients with wet age-related macular degeneration (wAMD) in treatment decision-making process.
A descriptive qualitative study was designed by using semistructured interviews, and the data analysis was conducted with the thematic analysis approach.
A convenient and purposive sample of 21 participants diagnosed with wAMD was recruited from May 2018 to September 2018. The study was conducted in the Eye Clinic of Southwest Hospital of Army Medical University in Chongqing located in the southwest of China.
The mean age of the participants was 64.48 years (ranging 50-81 years), and the duration of the disease ranged from 6 months to 48 months. Four major themes were identified from the original data analysis. These themes included facing the darkness (choosing from light and darkness and living in pain), constraints on decision making (doctor-oriented decision making, inadequacy of options and time), weighing alternatives (family influence, financial burden and maintaining social function) and decision-making support (professional decision-making assistance and peer support).
This is a qualitative study attempting to explore the patient experience of treatment decision making for wAMD disease in China. Previous literature has focused on treatment effect and symptoms, rather than the individual experience and the wide contexts from a sociocultural perspective. Further studies, such as cross-sectional studies, can be used to describe the status and determine the influencing factors of decision0making process, so as to develop an impact factor model of decision making and to formulate an intervention for patients with wAMD.
本研究旨在探讨湿性年龄相关性黄斑变性（wAMD）患者在治疗决策过程中的体验。
本研究采用描述性定性研究设计，通过半结构化访谈收集数据，并采用主题分析方法进行数据分析。
本研究于 2018 年 5 月至 2018 年 9 月，在位于中国西南部的陆军军医大学西南医院眼科，采用便利抽样和目的抽样方法，招募了 21 名被诊断为 wAMD 的患者。
参与者的平均年龄为 64.48 岁（50-81 岁），疾病持续时间为 6 个月至 48 个月。从原始数据分析中确定了四个主要主题。这些主题包括面对黑暗（在光明与黑暗之间做出选择和生活在痛苦中）、决策受限（医生导向的决策、选择不足和时间限制）、权衡选择（家庭影响、经济负担和维持社会功能）和决策支持（专业决策辅助和同伴支持）。
这是一项定性研究，试图探讨中国 wAMD 患者的治疗决策体验。以前的文献主要关注治疗效果和症状，而不是从社会文化角度关注个体体验和广泛的背景。可以进一步开展横断面研究，以描述决策过程的现状并确定影响因素，从而建立决策的影响因素模型，并制定 wAMD 患者的干预措施。
