‘I'd like to know what causes it, you know, anything I've done?’ Are we meeting the information and support needs of patients with macular degeneration? A qualitative study

OBJECTIVE: To examine patients’ experiences of information and support provision for age-related macular degeneration (AMD) in the UK. STUDY DESIGN: Exploratory qualitative study investigating patient experiences of healthcare consultations and living with AMD over 18 months. SETTING: Specialist eye clinics at a Birmingham hospital. PARTICIPANTS: 13 patients diagnosed with AMD. MAIN OUTCOME MEASURES: Analysis of patients’ narratives to identify key themes and issues relating to information and support needs. RESULTS: 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. CONCLUSIONS: 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.