A gap in communication between eye care professionals (ECPs) and patients has been identified when diagnosed with, or considered at risk of developing, macular disease.
The Macular Society carried out two surveys – one with patients and one with ECPs – to gain a better understanding of how macular disease affects patients and evaluated the communication of necessary information between ECPs and patients.
Results, which were published in science journal Nature, highlighted a difference in what ECPs thought they said to patients and what was actually remembered by patients.
Cathy Yelf, chief executive at the Macular Society, said: ‘It’s vital people with macular disease are helped to understand their diagnosis, what their treatment will be, if there is any, and that they are effectively directed to support outside their clinical care.’
Diagnosis delays
The survey of 122 ECPs included 53 (43%) from primary care and 69 (57%) from secondary care. Sixty-eight percent of respondents said they always gave patients information about macular disease at the point of diagnosis.
However, only 21% thought they provided information to patients at risk of developing the condition while 59% said they did this ‘sometimes’ or ‘often’ and 20% who ‘rarely’ or ‘never’ did. The Macular Society said these findings raised concerns about late diagnosis due to inconsistency in information because many patients were unaware of the symptoms of macular disease.
It noted that early treatment was crucial and delays have been shown to result in worse outcomes for patients with wet age-related macular degeneration (AMD) and diabetic macular oedema. Among ECPs, 75% either agreed or strongly agreed to the importance of providing information about a patient’s condition and the available support services at the point of diagnosis.
Yelf added: ‘We are pleased that ECPs are generally aware that their patients need emotional support, and we, as a charity, are continuing to work closely with them to ensure people know where to turn to in the aftermath of their diagnosis.
‘We also know the earlier patients are told about their risk of developing macular disease, the earlier we can be there to support them. Whether they have a treatable condition or not, the practical and emotional support that organisations like the Macular Society offer make a significant difference to the patient’s ability to manage their condition and safeguard their emotional wellbeing.’
Signposting support
The patient survey included responses from 214 people who either had dry or wet AMD or diabetic macular oedema, and the majority (78%) had low awareness of the Macular Society and its services.
Sixty-three percent of respondents said they did not know their symptoms were due to macular disease and 25% did not think these symptoms were important. Additionally, only 17% of patients were able to recall being signposted to support.
The Macular Society said this information gap meant many people, who later received a diagnosis, were not informed of the importance of regular eye examinations to detect the initial signs of the condition. It also noted that guidelines published by the National Institute for Health and Care Excellence and the Royal College of Ophthalmologists recommended signposting patients to available support services.
The Macular Society said its study highlighted a disparity between patient recall of information provision compared with ECPs signposting perceptions and stated behaviours. It cited similarities to a recent study that looked at mental health and support services for those with eye disease, which also found a lack of signposting for patients.
The charity speculated there could be many factors involved, such as patients forgetting or not being able to take in all the information provided. It noted there could be barriers faced by ECPs in relaying information effectively, such as time restraints or fear of overburdening patients with information.
The Macular Society concluded there was a clear need to optimise ECP communication around diagnosis, as well as more effective signposting of services provided by patient support organisations.
