Diabetes in the family: eye checks for a child with type 1, and for Atuk with type 2
A child with type 1 diabetes and Atuk with type 2 do not follow the same eye-check schedule. What the ISPAD, Malaysian Ministry of Health and NICE guidelines say about when to start and how often, and who arranges it.
- Screening for diabetic retinopathy (damage to the small blood vessels at the back of the eye) is separate from managing diabetes. Your diabetes team or GP arranges it.
- For type 1 diabetes in children, ISPAD 2022 says to start at puberty or from age 11 with 2 to 5 years of diabetes; the Malaysian guideline of 2011 says age 9 with 5 years or age 11 with 2 years; NICE says from 12. Type 2 starts at diagnosis.
- Retinopathy in children is uncommon: 5.8 percent in an ISPAD review of 156,090 young people with type 1, with fewer than 1 percent severe. It has no symptoms early on, which is why the checks are scheduled.
- For Atuk with type 2 diabetes, the Malaysian guideline says a first eye examination at diagnosis, then at least every two years, or at least yearly if the risk is higher. Ask his clinic which interval it uses.
- Sudden severe loss of vision or a dark curtain needs same-day care. Blurred vision is a reason to see a doctor, not a diagnosis.
When a child in the family has type 1 diabetes and Atuk has type 2, the household ends up with two sets of eye-check dates to remember, and no one is sure whether they follow the same rules. They do not. This page is about screening only: who should have their eyes checked for diabetic retinopathy, from what age, and how often, according to the guidelines. Retinopathy means damage to the small blood vessels at the back of the eye.
It does not cover how to manage diabetes, and it says nothing about what to eat or which medicine to take. That belongs to your child's diabetes team and Atuk's doctor. The eye check is one appointment among many, and the people who look after the diabetes are the right people to arrange it.
Does a child with diabetes need eye checks, and from what age?
Yes, but not straight away for type 1. The international guideline for children says screening for diabetic retinopathy should start at puberty or from age 11 years, once the child has had diabetes for 2 to 5 years, and for type 2 diabetes it should start at diagnosis. That is the ISPAD guideline from 2022 (the International Society for Pediatric and Adolescent Diabetes).
Guidelines from different places set the start slightly differently, which is why you may hear different ages. The Malaysian Ministry of Health guideline on screening for diabetic retinopathy, issued in 2011, says a child with type 1 diabetes should first be screened at age 9 with 5 years of diabetes, or at age 11 with 2 years, and a child with type 2 at diagnosis. The NICE guideline for England says to start referring children with type 1 or type 2 diabetes for retinopathy screening from 12 years.
Do not try to pick the "right" one yourselves. Ask the child's diabetes team which schedule they follow and when the first eye check is due.
Do children actually get diabetic retinopathy?
Some do, but it is uncommon and the serious form is rare. In an ISPAD review of 156,090 young people with type 1 diabetes, aged 10 to 21 and with a median duration of 5.2 years, any retinopathy was found in 5.8 percent, and it varied from 0 to 16.2 percent between countries. Fewer than 1 percent had severe retinopathy. NICE says retinopathy that needs treatment is extremely rare in children under 12.
So why start at all? Because retinopathy becomes more common the longer someone has had diabetes. The ISPAD guideline notes that adolescents are more likely than adults to progress to the stages that threaten vision, and that this is the time to direct efforts to screening. The Malaysian guideline adds that diabetic retinopathy is without symptoms in its early stage, so a child cannot report it. A first check at the right age gives the team a baseline to compare against later.
How often should the child's eyes be checked after that?
It depends on the guideline and on what the first check shows, from every year to every two or three years. The 2022 ISPAD guideline suggests every 2 to 3 years in its summary table, with a two-yearly check for those with under 10 years of diabetes, only the mildest changes and the team's targets met. It adds that the interval can be lengthened to 3 years if the first assessment shows no retinopathy, and that it needs to be more frequent when there are features that put vision at risk.
The Malaysian guideline says people with diabetes should be screened at least every two years, and those at higher risk (longer diabetes, or poor control of blood sugar, blood pressure or blood fat) at least every year. NICE's England guidance for children says annual monitoring from age 12.
The gap between "annual" and "every two or three years" is real, and it reflects different countries, different years and different evidence. If the eye check finds retinopathy, the Malaysian and ISPAD guidelines both say to come back sooner. Ask the team what the plan is and write the date on the family calendar.
What happens at a diabetic eye check for a child?
The pupils are widened with drops, and the back of the eye is looked at directly or photographed. ISPAD says the screening should be done through dilated pupils by an ophthalmologist, an optometrist or a trained, experienced observer, using a microscope-style examination or fundal photography (a picture of the retina). The Malaysian guideline lists visual acuity (the letter chart) plus fundus photography or a dilated fundus examination.
The drops can make a child squeamish and blur the near sight for a while. Our article on those eye drops at the clinic explains what they do, so you can tell your child before the day.
ISPAD also recommends that a full eye examination be done at the same time to look for cataract and major glasses needs. It notes that cataract has been reported in 0.7 to 3.4 percent of people with type 1 diabetes, sometimes before the diagnosis. So the appointment is also a general check of how the eyes are working. If glasses come up, this article on what to do when a child needs glasses may help.
What about Atuk, who has type 2 diabetes?
For an adult with type 2 diabetes, the Malaysian guideline says the first eye examination should be at the time of diagnosis, and after that at least every two years, or at least every year if the risk is higher. It explains why: the start of type 2 diabetes is often hard to date and may come years before the diagnosis, so the eyes may already be affected.
The 2023 National Health and Morbidity Survey found that 15.6 percent of Malaysian adults have diabetes, 9.7 percent known and 5.9 percent raised blood glucose in people not known to have diabetes. So there may be more than one person in the extended family whose eyes should be checked.
Be aware that a patient information page of the Malaysian Society of Ophthalmology says once a year, while the guideline itself says at least every two years, and every year for higher-risk people. The guideline is from 2011 and was due to be reviewed in 2015, so a newer version may exist. This is a good reason to ask Atuk's clinic what interval it uses, and to keep the appointment card.
If the eye check finds signs of retinopathy, the guideline moves the follow-up to every 6 to 12 months and refers some findings to an ophthalmologist. If Atuk also has trouble with his sight for other reasons, such as cataract, eye checks for the whole family covers what else to look for in a grandparent.
Who arranges these checks, and how can the family keep track?
The diabetes team or the family doctor arranges them, so start by asking them. Say: "When is the next eye check due, and where?" For a child, the diabetes clinic will know the local pathway. For Atuk, ask his clinic, because the 2011 guideline lists health clinics with fundus cameras as part of screening, and what is available where you live may have changed.
Keep the results. A retinal photograph or a short report is what the next examiner compares against. Store the papers in one place, and let the children know where they are. Put both the child's date and Atuk's on the same family calendar, and use a fixed event as a nudge. World Diabetes Day is on 14 November, and the International Diabetes Federation's theme for 2026 to 2027 is "Early action on diabetes".
Children with other long-term conditions have their own eye-check schedules. See juvenile arthritis and the eye and eye checks for children on long-term steroid medication for two examples.
Which changes should not wait for the next scheduled check?
Sudden severe loss of vision, or signs of a retinal detachment such as a dark curtain, need same-day care. The Malaysian guideline's referral table lists both as emergencies for same-day referral to an ophthalmologist. It lists an unexplained drop in visual acuity as needing referral within four weeks.
Blurred vision has many causes, including glasses that need changing, and the search "kencing manis mata kabur" cannot tell you which. Blurring is a reason to see a doctor, not a diagnosis. And its absence proves nothing: early retinopathy has no symptoms, which is exactly why the checks are scheduled and not left to symptoms.
If you are not sure how to start, ask the diabetes team or your GP to arrange the referral, and bring this page's questions with you.
- There is a sudden, severe loss of vision. The Malaysian guideline lists this as same-day referral.
- A dark curtain or shadow moves across the vision. The guideline lists signs of acute retinal detachment as same-day referral.
- Vision has dropped and there is no explanation, such as new glasses being needed. The guideline lists this as referral within four weeks.
- A child or an adult with diabetes has reached the age or duration at which screening should start and has never had an eye check. Ask the diabetes team or GP to arrange it.
Common questions
At what age should a child with type 1 diabetes have their first eye check?
How often does a child with diabetes need eye screening?
Do children get diabetic retinopathy?
How often should Atuk with type 2 diabetes have his eyes checked?
Does kencing manis cause mata kabur, blurred vision?
What happens at a diabetic eye check for a child?
Who should arrange the eye check?
- Pediatric Diabetes 2022 · ISPAD Clinical Practice Consensus Guidelines 2022: Microvascular and macrovascular complications in children and adolescents with diabetes · pubmed.ncbi.nlm.nih.gov
- Ministry of Health Malaysia · Clinical Practice Guidelines: Screening of Diabetic Retinopathy (2011), as hosted by the Malaysian Society of Ophthalmology · www.mso.org.my
- Malaysian Society of Ophthalmology · Diabetic retinopathy patient information · www.mso.org.my
- NICE NG18 · Diabetes (type 1 and type 2) in children and young people: diagnosis and management · www.nice.org.uk
- Institute for Public Health, Malaysia · NHMS 2023 fact sheet · iku.nih.gov.my
- International Diabetes Federation · World Diabetes Day 2026 to 2027: Early action on diabetes · idf.org