Faculty of Health Sciences, Staffordshire University, Stoke-on-Trent, UK.
BMJ Open. 2013 Nov 7;3(11):e003306. doi: 10.1136/bmjopen-2013-003306.
To examine patients' experiences of information and support provision for age-related macular degeneration (AMD) in the UK.
Exploratory qualitative study investigating patient experiences of healthcare consultations and living with AMD over 18 months.
Specialist eye clinics at a Birmingham hospital.
13 patients diagnosed with AMD.
Analysis of patients' narratives to identify key themes and issues relating to information and support needs.
Information was accessed from a variety of sources. There was evidence of clear information deficits prior to diagnosis, following diagnosis and ongoing across the course of the condition. Patients were often ill informed and therefore unable to self-advocate and recognise when support was needed, what support was available and how to access support.
AMD patients have a variety of information needs that are variable across the course of the condition. Further research is needed to determine whether these experiences are typical and identify ways of translating the guidelines into practice. Methods of providing information need to be investigated and improved for this patient group.
调查英国年龄相关性黄斑变性（AMD）患者在信息和支持方面的体验。
在 18 个月的时间里，对患者的医疗保健咨询和 AMD 生活体验进行探索性定性研究，以调查患者的体验。
伯明翰医院的专科眼科诊所。
13 名被诊断为 AMD 的患者。
分析患者的叙述，以确定与信息和支持需求相关的关键主题和问题。
信息来自各种来源。在诊断前、诊断后以及病情发展过程中，都存在明显的信息不足的证据。患者往往信息不足，因此无法自我倡导，也无法识别何时需要支持、有哪些支持可用以及如何获得支持。
AMD 患者有各种各样的信息需求，这些需求在病情发展过程中是多变的。需要进一步研究以确定这些体验是否具有代表性，并确定将指南转化为实践的方法。需要研究并改进为这一患者群体提供信息的方法。
