GP Help for Patients diagnosed with AMD not improved, claims new study

A study has found that patients who go to see their GP with degenerating eyesight are not being offered support and help. At the time of diagnosis, patients, who had since been diagnosed with AMD, found their GPs could be unhelpful and unsupportive. This had not improved since a previous survey. The study was conducted by scientists from Royal Holloway, University of London and the Macular society. It was published in BMJ Open, an open access, peer-reviewed journal.

Help for Patients diagnosed with AMD not improved by GPs, claims new study

Members of the Macular Society were asked to take part in a survey. The patients had been diagnosed with Age-related Macular Degeneration or AMD and were asked about their experiences at diagnosis and whether they had been offered support afterwards. Of those participants who had been diagnosed by a GP, almost 40% felt that their GP had been ‘not at all well-informed’ about the disease and half felt that their doctor had not been helpful or supportive at all.

The study followed up on a previous study conducted in 1999. This study found that patients found specialists dismissive, unfeeling or brusque. They also did not feel that GPs were very well-informed about the condition. The results of this study caused the Royal College of Opthalmologists to produce guidelines for AMD, setting standards for best practice and including recommendations on the information that patients would need to know when diagnosed. This included a clear diagnosis so that patients knew the name of their condition, their prognosis and what to do if their vision deteriorated. The guidelines highlighted that it was important to be aware of the impact of a diagnosis of AMD and that patients needed empathy. Linking patients to the Macular Society would ensure that they could find further help and information. Patients also needed to be informed that the eye condition could cause visual hallucinations, as these could be mistaken for symptoms of dementia.

AMD is now the leading cause of blindness in the developed world. The disease is a progressive, chronic eye condition which affects people who are 50 years and over. One in five people aged 90 will have developed the condition. There are currently 500,000 people living with the condition in the UK, and the number of patients is expected to grow by a third by 2020. Some forms of the disease can be treated successfully with early information and support, but many people who develop AMD can still become blind.

Questions from the original study were included to enable comparison over time. Seven new questions were included to assess whether the previously recommended guidelines had been put into practice and check out how people felt about the information and support offered around the time of diagnosis. The scientists collected information on the patients including age and gender, whether they had wet or dry AMD in one or both eyes, and which healthcare professional had given them their diagnosis. The survey could be answered by telephone if necessary.

In the later survey (2013) respondents were younger, less likely to be registered as blind or have both eyes affected by AMD and more likely to have been diagnosed by an optometrist. They were significantly more likely to report feeling that the professional who diagnosed the condition was interested in them as a person. They were more likely to have been given the name of their condition and were generally more satisfied with their diagnostic consultation. Women were less likely than men to report receiving information and support on care. Older people were more likely to report overall satisfaction with their diagnostic consultation and help and advice when diagnosed but were less likely than younger people to receive information on what to do if there was a sudden deterioration in their vision.

Comparing the survey responses regarding GPs, only 23% of people felt that their GP was well informed about AMD. However 39% felt that their GP was not well informed and almost half of the respondents felt that their GP was ‘not at all helpful/supportive’. Overall there was no significant difference between the two survey responses regarding GP help and information. The researchers were also concerned at whether patients were getting enough information on what to do if their sight deteriorated.

A minority of people are regularly seen by clinics - those receiving treatment. The researchers noted that a free resource on AMD produced by the Macular Society would appear to be underused. This is the first time the survey has been revisited and in some cases, it was relying on people’s recall of events. The study has highlighted that while there have been some improvements in the service that patients receive while being diagnosed with AMD, there is still some way to go to improve patient support and information.

Boxell, E.M., et al., 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, February 2017, BMJ Open, Vol.7, Issue 2

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