Healthcare experiences of patients with age-related macular degeneration: have things improved? Cross-sectional survey responses of Macular Society members in 2013 compared with 1999

OBJECTIVE: To investigate healthcare experiences of patients with age-related macular degeneration (AMD) and determine whether a previous survey and Royal College of Ophthalmologists (RCOphth) management guidelines brought improvements. DESIGN: Cross-sectional survey of Macular Society members in 2013 compared with previous 1999 survey. SETTING: UK Postal Questionnaires. PARTICIPANTS: 1169 respondents in 2013 (1187 in 1999). INTERVENTION: Publication of 1999 survey results (2002), and RCOphth AMD guidelines (2009). MAIN OUTCOME MEASURES: Respondents answered questions about experiences at diagnosis. Five questions were replicated from the 1999 survey for direct comparison in the 2013 survey which included additional questions based on 2009 RCOphth recommendations for information and support provision for patients with AMD. RESULTS: Most 2013 survey respondents were given the name of their macular condition (91%), felt the healthcare professional was interested in them (71%) and were satisfied overall with the diagnostic consultation (76%). These outcomes show significant improvement since 1999. Within the 2013 sample, multivariable analyses showed gradual trends of improvement over time in: provision of written information, Macular Society information and receiving appropriate help, support and advice at diagnosis. Only overall satisfaction with the diagnostic consultation (but not the other nine areas of information and support provision studied) significantly improved in the time after publication of the RCOphth 2009 guidelines. There were no significant improvements associated with the publication of the 1999 survey results. Low information and support provision remained, for example, 44% of respondents diagnosed after the RCOphth 2009 guidelines reported not receiving information on what to do if vision deteriorated. Lack of such information at diagnosis was significantly associated with registration as sight impaired (p<0.01). Reports of general practitioner (GP) knowledge of AMD remained low: 39% reported their GP was ‘not at all well informed’. The 2013 respondents reported lower levels of help and support from GPs than 1999 respondents (p<0.001). CONCLUSIONS: Patients diagnosed with AMD after 1999 (vs before 1999) reported better experiences at diagnostic consultation. However, information and support provision at diagnosis, and satisfaction with GPs remained low.