Patients reveal communication gaps in diagnosis

Patients have highlighted noticeable gaps in communication when they are first diagnosed with macular disease, or if they are considered at risk of developing the condition.

Two surveys, one carried out with patients and the other with Eye Care Professionals (ECPs), found there's a difference in what ECPs think they tell patients and what patients may actually remember.

Even though ECPs agree it's crucial to share information about a patient's condition and the available support services, many patients don't remember getting this information when they were diagnosed.

In the ECP survey, the majority of participants (68%) said they always give patients information about macular disease at the point of diagnosis. Despite this, only 21% said they consistently provide information to patients considered at-risk of developing the condition. 

Survey results

The results, published in Eye in January, also revealed that among the remaining ECPs, 59% stated they either 'sometimes' or 'often' provided information to individuals considered at risk, while the remaining 20% admitted they 'rarely' or 'never' did.

The findings raise concerns that this inconsistency in information could lead to late diagnosis, as many patients are unaware of macular disease symptoms.

Guidelines from both the National Institute for Health and Care Excellence (NICE) and the Royal College of Ophthalmologists (RCOphth) recommend providing sufficient information about age-related macular degeneration (AMD) to speed up diagnosis and treatment, to prevent vision loss.

For people with wet age-related macular degeneration (AMD) and diabetic macular oedema (DMO), early treatment is crucial and delays have been shown to result in worse outcomes for their sight. 

In the patient survey, participants (63%) revealed they did not know their symptoms were due to macular disease, and 25% did not think these symptoms were important.

This information gap meant many people, who later went on to be diagnosed, were not informed of the importance of regular eye checks to detect the initial signs of the condition.

A total of 214 patients, with AMD or DMO, took part in the survey.

Support services

The NICE and RCoPHth guidelines also recommend signposting patients to the available support services. But, the research showed many people, once they have been diagnosed, are unaware of the emotional and practical support offered by charities such as the Macular Society. This includes the organisation’s emotional support, such as local groups, befriending and counselling.

Of the 122 ECPs who took part in the survey, 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. However, only 17% of patients were able to recall being signposted to support.

Cathy Yelf, Macular Society chief executive, 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.

“We are pleased that eye care professionals 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.”