Key messages for patients requiring treatment

Each person with diabetes needs information to help them manage this complicated disease, remain healthy and address any complications that arise. Factors which affect the information and communication needs of people with diabetes include: duration of disease, level of education, health literacy (skills in understanding health education information), diabetes knowledge, socioeconomic status, marital status, social support, mental health, self-efficacy and self-management of diabetes.

Information on how diabetes is affecting the eye can be given in various ways. Paying attention to the circumstances and communication preferences of each person with diabetes will increase their understanding and recall of the information and enable discussion with relatives and friends.

It is important to explain or remind people with diabetes about three key issues relating to the effects of diabetes and the eye:

1. What happens in the eye when you have diabetes?
2. Why does this happen in the eye when you have diabetes?
3. How can these changes in the eye be avoided?

People with diabetes who are identified as needing treatment will be anxious and worried about the long term outcome. Even in a busy clinic this cannot be overlooked, and where possible a trained counsellor should be involved.

Important messages for patients

About treatments for proliferative diabetic retinopathy

• Options include pan retinal photocoagulation (PRP) laser and anti-VEGF drugs
• Laser treatment reduces the risk of visual loss and blindness
• Although laser treatment is effective, some patients may still develop vitreous haemorrhage. The haemorrhage is caused by the diabetes and not by the laser, it may mean the patient needs more laser treatment
• Laser treatment often reduces peripheral and night vision; treatment may moderately reduce central vision
• The conventional long pulse 100 milliseconds PRP treatments are associated with loss of vision. The recommended short pulse 20-30 milliseconds PRP treatments are less likely to cause this complication
• Anti-VEGF injections deal with the growth factor that causes growth of new fragile blood vessels that are prone to bleeding. In a high resource setting they may be offered to patients who are certain that they will comply with follow up.

About intravitreal anti-VEGF injections

• They are very effective in reducing oedema and restoring sight
• They are better than laser for central macula swelling. The advantages seem to be better final visual acuity and less visual field loss
• Initial treatment is with monthly injections for 4 to 6 months
• Depending on the response the interval between injections is then extended
• Treatment is likely to be prolonged and take at least 2 years. Patients should understand that intravitreal injections do not have the proven track record of PRP treatment
• Once stable without treatment over several monthly assessments, the frequency of follow-up appointments can be reduced gradually to 3 or 4 times per year
• If a patient receiving treatment with anti-VEGF becomes pregnant at any stage of the treatment cycle the treatment will need to be discontinued and considered for treatment with laser
• Serious side effects are rare, but must be mentioned – especially endophthalmitis which can lead to blindness.

About vitreoretinal surgery

• May be sight restoring
• After the blood blocking the vision is removed, any detached retina should be flattened and reattached
• It is more complex than vitrectomy for other eye conditions (such as retinal detachment or epiretinal membranes) because the fibrovascular membranes are attached to the retina which is very fragile and can easily tear
• Sometimes a retina with proliferative retinopathy also has poor blood supply and this can often affect the final vision. This is known as poor macular perfusion
• The patient’s own lens will develop a cataract
• While it is a complicated surgery and the outcome may be poor (for the reasons mentioned above), no treatment will usually lead to complete loss of vision and many patients will have good vision restored.

Counselling people living with diabetes requires a holistic approach to promote health and prevent complications such as diabetic retinopathy and its progression. It is the responsibility of all members of the health care team to reinforce all aspects of self-care.

In your setting, what methods do clinicians use to inform patients about the treatment options for diabetic eye disease? In your experience does a patient’s level of health literacy affect the adherence to treatment?