Diabetic retinopathy screening & prevention
in children and young people

David Kinshuck



When does retinopathy develop in children?

In developed countries it is unusual for children to develop retinopathy, but it is not at all uncommon in poorer countries. It is unusual in Italy, and linked to the duration of diabetes, but 12% of Russian diabetic children had retinopathy, with f children with severe proliferative retinopathy in Moscow, age 10y. See   

Retinopathy has even been reported after 1 months duration of diagnosed diabetes, in a 16y old patient, see. But this is unusual. Whilst there are genetic factors, it is well recognised that an improvement of diabetic control can precipitate retinopathy (discussed here, identified in DCCT papers and here, very well recognised in pregnancy). This may be the mechanism in Hamilton's patient...although this patient may have also had their pubertal growth spurt which will also stimulate retinopathy.

Similarly accelerated retinopathy development is not uncommon after 12 months diabetes, if control has improved a lot, as here.  

But retinopathy is most unusual in children whose control has been reasonable without much glucose fluctuation. Generally screening is not needed <13y.


How should retinpathy screening be carried out?

As a rule at 12y-16y many children can be refered to adult optometrist screening program, and this should be the case if parents and child are happy with this and are reliable.  Younger children or those not attending the screening program, should be examined by their diabetologist (or expert ophthalmologist) yearly if possible. This is not only to pick up the occasional case with retinopathy, but to get the child and family into the pattern of having yearly eye examinations.

Until recently nearly all type 1 insulin dependant patients developed retinopathy, so yearly examinations are critical after 16y. Strictly speaking examinations every 2 years may suffice if there is no retinopathy whatsoever, but this makes it harder to create a pattern and riskier if a mistake is made.

Examine carefully if there has been >8y of very poor diabetic control. Consider other factors that influence retinopathy ...such as wildly fluctuating control, high blood pressure, or sickle trait or equivalent...examinations are more critical.

Consider genetic factors...there are genes that influence retinopathy, and some of these will work by influencing blood pressure. For example, if there is a family history of hypertension that child will be at much greater risk of developing complications. Similarly older sibs may develop retinopathy.

Expect retinopathy with 14y of diabetes with mediocre or poor control. Logically, retinopathy is uncommon because they have not been diabetic long enough. Take a brief history ...are there black spots or other problems may be due to bleeding?


Are you an expert in detecting retinopathy?

Screening is carried out with retinal photography through a dilated pupil.

If your patient cannot be sent to the optometry program, then they should be examined in clinic. As there may be some compliance issues in such patients, this should be on the same day they attend for their regular check up.

What should you look for in terms of retinopathy?

Preventing retinopathy

Insulin pumps with glucose sensors are essential for children. Pumps can be used even with learning difficulties. An Hba1c of  7.5% / 58 mmol/mol would be ideal. New pumps will eben adjust the insulin dose as the glucose level fluctuates (slosed loop system).


Contact between health professionals and patients

As an ophthalmologist I will see patients who the system has failed or whose diabetes was aggresssive, who develop retinopathy. Looking though the literature it is clearly that regular contact between the diabetic team and professional and patient is critical. In the UK until recently there were were long gaps between consultations.

Even now, (with adult patients) problems are identified, and patients are not followed up but told to 'contact me' if problems persist...in practice even many adult patients do not follow up on such issues, which then continue for years on end. This is partly a resource issue...but it is partly because team members are spending so long with patients with complications that patients without are not followed up as frequently.

Targets may not be considered logically...the able child, with a wonderful family, no problems at school, no emotional problems, using glargine/radid acting basal-bolus regime, could be expected to maintain an HbA1c of ~6.5. Such a child may be 7.0 without a pump, 6.5% with a pump, This difference is equivalent to an 18% lower risk of complications. (As soon as pumps monitor glucose levels all children will need one...do we need to get our children ready?). But if that same child was using a twice daily insulin mixture, 7.5% might be the best achievable.

In practice many children canot achieve such low levels, and average levels in clinics are often 8.9%, but levels are dropping. See. There is a seasonal variation, and this can lead to more hypos  in April. Similarly, there were some clinics in Eastern European clinics with very little retinopathy in their patients, even using older insulins. Such clinics had plenty of staff and organised regular contact between patients and professional. Similarly in the UK I have attended meetings when patients were presented 'this bad control was for 6 months'..patients should really be seen each month, and problems addressed right away.

Many problems can be prevented by having regular contact. A problem develops one month, and is reviewed the next, and if worse further action is needed, until improved. In this way the problem is usually sorted after 3 months rather that persisting for 9 months. Even now many adult patients will have a period or poor control for 6 months-2 years when DKA or hypos are likely to occur, before their problem is sorted. Generally the quality of care is improving year by year, as it must if retinopathy and renal failure is to be prevented.

At a recent dicussion at Good Hope we heard that in clinics with children and young people with well controlled diabetes, patients see their doctor and their nurse and their dietician each month, each for one hour. This contact simply does not happen in most UK clinics.

We know the high risk groups  ..80% of complications occur among the 20% of children who had recurrent events.

Some girls (and boys) will have an eating disorder, and use lack of insulin to slim...they might need psychotherapy, a healthy high fibre diet, and a lot more exercise...the whole family might need support which will include dietary advice and home visits by an expert dietician (see recent TV programs)...is this done? A low HbA1c may not be possible at such a stage....the priority is to avoid DKA and hypos. Any obesity will be due to insufficient exercise or the wrong/too much food, rather than too much insulin. Girls need proper family planning advice.....pregnancy is a really big problem, not least because it can precipitate retinopathy.

Similarly smoking, binge drinking are issues....are there any techniques that you can use to increase the child's self esteem...the higher the self-esteem, the better the diabetic control and so on?Young people or children with poor control have behaviour problems and lower social competence, higher levels of family conflict, and their parents reported lower levels of family cohesion, expressiveness and organization (see also).  We are improving the care for this group, although we have a long way to go.


This author

This author is not an expert in this field specifically, but has reviewed published online literature to prepare this webpage.