• age related macular degeneration

The aim of Mitchell et al‘s study¹ in collaboration with the Macular Disease Society (MDS) was to assess the perceived quality of health care of people with macular disease in the United Kingdom. The study was performed in 1999 and took the form of a retrospective audit by postal survey of 2000 members of the MDS. I performed a similar but smaller study in collaboration with the MDS 7 years earlier.² This also took the form of a retrospective audit by postal survey of 200 members of the MDS. The aim was to assess the clinical management of patients with age related macular degeneration (ARMD) in the United Kingdom from the patients‘ perspective. The final response rate was 79% (similar to 77% of Mitchell et al) and patients had attended over 105 ophthalmic units throughout the United Kingdom. Mitchell et al omitted this earlier study from their discussion but comparison of the two studies raises some noteworthy points.

The prevention³ and treatment⁴ of ARMD remains far from ideal both for the majority of patients and their ophthalmologists. Members of the MDS are likely to be a highly motivated study group and it is not clear how their views will reflect the views of patients as a whole with ARMD. However, both studies highlighted the fact that lack of information and advice on ARMD is a significant cause of dissatisfaction for these patients. Mitchell et al asked if the diagnostic consultation with the eye specialist was satisfactory: 59% responded “yes” and 41% “no.” The two most common reasons given for a negative answer were the attitude of the specialist and lack of information and advice (43.5% and 43.4% respectively of those answering this question). The earlier study specifically asked whether patients were given written information on ARMD, were informed about support groups or informed about relevant radio programmes by the eye department.² Only 6% received written information, 14% were given details of support groups, and 3% details of relevant programmes. By definition 100% of the study group would have liked to have been informed of the existence of the Macular Disease Society by the eye unit. However, nine different sources were cited for discovering the MDS; over 80% from radio and magazines with only 12% from the ophthalmic unit. Unfortunately, despite that fact that the two studies are separated by 7 years, any temporal comparison has to be undertaken with caution. The protocol of both surveys included questionnaires being sent to members of the MDS chosen at random from the MDS mailing list. It is therefore conceivable that a proportion of the original study group also formed part of the second, larger study group. What is clear though, is that despite the fact that patients want information on ARMD and the fact that there are readily available sources (for example, free information booklets on ARMD from the Royal College of Ophthalmologists or Royal National Institute for the Blind), ophthalmic units throughout the United Kingdom are still failing routinely to provide such information to their patients.