Lesson 2: Exploring connections

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To begin this week we look at three more fictional case studies which explore how the choices people with diabetes make in their local health care settings affect how their disease progresses – their disease pathway.

As you read through, can you identify the key steps which could be taken, either at the health system level or in your local setting, to provide more effective support to people with diabetes who face similar issues to our cases here?

Katy was diagnosed with type 1 diabetes when she was seven years old, and started on insulin. Her blood sugars, managed by her parents, were stabilised and well-controlled. She regularly attended the paediatric diabetes clinic until the age of 13. Her parents divorced which led to a break down in her attendance at the clinic and her diabetes control deteriorated. She experienced episodes of hospitalisation due to diabetic ketoacidosis.

At 16, Katy also began to experience an eating disorder and became very weight conscious. Her diabetes control was very difficult as she transitioned to the adult diabetes clinic. At her first eye screening check-up at 17 years old no retinopathy was detected. She went to university and stopped attending eye screening. At the age of 24, Katy suddenly developed eye floaters and was diagnosed with proliferative diabetic retinopathy (DR) in both eyes. Laser treatment commenced immediately but she failed to show up for follow up after the first treatment. Six months later Katy needed vitrectomy under general anaesthesia in the left eye and was also experiencing renal problems and some neuropathy in her right foot.

Comment on Katy’s case: Katy had access to all the services she required but did not have enough support from her family. It is important to establish a partnership approach to diabetes control with each person with diabetes and their family, especially for type 1 diabetes.

Patrick worked as a bus driver. When he was 53 years old, he was diagnosed by his doctor with high blood pressure, a random blood sugar level of 17mmol/l and an HbA1C level of 12%. He was not obese and his renal function was normal. The doctor started him on several drugs: Metformin, Asprin, Gliclazide and Ramipril. No ophthalmoscopy was done as Patrick said his vision was fine. The nurse who normally provided nutritional advice to newly diagnosed people with diabetes was on leave, so no information on diet was provided.

Patrick felt reassured that he was on medication, and although his sight was failing a little (which he had not declared) he could manage to keep working if he did not draw attention to it. He did not discuss his diabetes problems at work in because he was afraid to lose his job. Six months later, he was unable to drive confidently and at the eye clinic he was diagnosed to have a cataract in his right eye with a poor visual acuity of 6/60 and some mild proliferative changes in the left eye with a worse vision level of 6/18.

Patrick had to save money for six months to pay for the cataract surgery. His diabetes management was also ad hoc and dependant on when he had money to buy his drugs. His vision in both eyes continued to deteriorate, and he was found to have sight-threatening DR following cataract surgery. Unfortunately, there were no lasers or trained personnel at the eye clinic to continue treatment.

Comment on Patrick’s case: Late diagnosis, personal and financial challenges and the lack of health services are the reality faced by many people with diabetes around the world. A coordinated effort across all levels of health care to support and manage diabetes first and foremost, can inform and prepare the person with diabetes. Employers may be harder to convince to provide alternative options for people with diabetes.

Ming has been living with diabetes since she was 12 years old. When she turned 18 she was discharged from the children’s endocrinology clinic and her general practitioner (GP) has been managing her care since then. There is no national diabetic retinopathy screening programme in her country but her GP was aware of the need for regular screening and she saw her optometrist for screening every two years.

At the age of 23, Ming chose to start a family and the midwife at the antenatal clinic reminded her to get her eyes examined. This prompted her to go back to the optometrist who identified signs of pre-proliferative disease and immediately referred her for review. By the time she saw the ophthalmologist two weeks later, she was 28 weeks pregnant. She was asymptomatic and her vision was normal, 6/6 in both eyes. The fundus examination confirmed the pre-proliferative diabetic retinopathy in her left eye but found that the right eye had new vessels growing from the disc. An optical coherence tomography (OCT) scan showed mild diabetic macular oedema encroaching on the fovea. Treatment with anti-VEGF drugs was not
recommended because of the risk to the foetus and Ming was treated with pan-retinal photocoagulation instead. More than 3000 laser burns were given over a three week period in three separate sessions. The new vessels were resolved. Her macular oedema got mildly worse and vision dropped to 6/9. She was reviewed every two weeks by her ophthalmologist until she had delivered her baby.

When Ming was re-examined six months after her baby was born, her vision was 6/9 in the right eye and 6/12 in the left eye. Ming had diffuse macular oedema affecting the fovea on the left eye. She had also developed signs of proliferative retinopathy in the left eye. Because of her macular oedema, the decision was made to treat with an anti-VEGF drug (Lucentis) rather than laser and there was rapid resolution of the new vessels. She needed monthly injections of Lucentis for nine months to bring the oedema under control. The interval was then extended to six weeks and a few months later to every eight weeks. Two years after starting anti-VEGF treatment the oedema was under control and the new vessels had completely resolved. Ming’s vision had stabilised at 6/9 in the right eye and 6/6 in the left eye. Medical management of her diabetes was also under control.

Comment on Ming’s case: Pregnancy can lead to rapid progression of diabetic retinopathy. It is recommended that women living with diabetes who are planning a pregnancy should have a check-up after the first antenatal visit. If all is well a further examination should be done at 28 weeks. However, if DR is detected, the next examination is recommended at 16 – 20 weeks. Ideally, guidance on managing eye complications should be provided at all contact points between people with diabetes and the health service. The team approach between health providers is essential to direct and guide a person with diabetes.

Discussion: Improving availability, accessibility, affordability and awareness are the key cornerstones for improving health service coverage. Using the case studies above discuss the interplay between the four “A’s” and the importance of an integrated approach to diabetes care.