Living Without a Diagnosis: A Patient's Perspective on Diabetic Macular Ischemia

Diabetic macular ischemia (DMI) is a common complication of diabetic retinopathy (DR) that can result in progressive and irreversible vision loss. DMI is associated with damage in the vessels that supply blood to the retina and the enlargement of the foveal avascular zone. Currently, there are no approved treatments specifically for DMI. Furthermore, there is limited published information about the prognosis, prevalence or outcomes of DMI, and there is no consensus regarding diagnostic criteria. It is vital to ensure that there is sufficient, accessible and accurate information available to support patients, caregivers and physicians. To lay the foundation for more research into DMI and its impact on patients, we (a patient with DMI and an expert ophthalmologist) have worked together to interweave our personal perspectives and clinical experiences with a review of currently available literature on DMI. The development of a set of confirmed diagnostic criteria for DMI would assist both patients and physicians, allowing patients to access validated information about their condition and supporting the development of clinical trials for treatments of DMI. Training for physicians must continue to emphasise the importance of treating a patient holistically, rather than only treating their symptoms. Most importantly, developing trust and a healthy rapport between a patient and their physician is important in managing health anxiety and ensuring adherence to beneficial treatments or lifestyle adjustments; physicians must cultivate an open and flexible management approach with their patients. Finally, holistic educational programmes for patients, physicians and the general public around DMI and how it can affect daily functioning would facilitate general understanding and disease awareness. Plain Language Summary Diabetic macular ischemia (DMI) is a common problem for patients with diabetic retinopathy that can lead to sight loss. There is very little information available about DMI, particularly from a patient's point of view. To address the lack of information about DMI, we (a person with DMI and her eye doctor) have worked together to examine what it is like to live with DMI. It is important to provide clear and accessible information about diseases to patients and carers. The lack of information about DMI may be upsetting for some people, and should be addressed with more research. Developing of a set of confirmed signs and symptoms for the diagnosis of DMI would allow people to be more confident in the information that they receive about their disease, and support the development of treatments for DMI. The support of others is central to the wellbeing of people with vision loss. Although people with vision loss may also lose independence, care from loved ones can help to improve quality of life. Most importantly, developing trust between a patient and their doctor is central to managing people's fears about their eyesight, and making sure that they follow helpful advice. Doctors must use an open and flexible approach with their patients, providing information in an honest and understandable way.

Automated summary

Diabetic macular ischemia is a common complication of diabetic retinopathy that can result in vision loss. Despite the lack of consensus and information on prognosis, prevalence, and diagnostic criteria, it is crucial to provide sufficient, accessible, and accurate information to support patients, caregivers, and physicians. Developing confirmed diagnostic criteria for DMI would assist patients in accessing validated information and support the development of treatments. Trust and open communication between patients and physicians are important in managing health anxiety and ensuring adherence to beneficial treatments.