Researchers who conducted a global survey of 78 ophthalmology clinics across 24 countries identified key challenges in the management of diabetic macular edema and highlighted strategies to improve treatment adherence and patient outcomes. The study gathered insights from 5681 participants, including patients with diabetic macular edema, healthcare providers, and clinic staff, to provide a comprehensive review of real-world barriers and potential solutions.
The surveys were completed anonymously and included both single- and multiple-response questions. The researchers, led by Focke Ziemssen, MD, FEBO, of the University Eye Clinic, Department of Ophthalmology at the University Hospital Leipzig in Germany, collected information on personal characteristics, appointment attendance challenges, treatment experiences, and improvement opportunities for support from patients, providers, and clinic staff.
According to the recent data published in Ophthalmology and Therapy, the survey revealed that many patients struggled with the logistical and psychological demands of diabetic macular edema (DME) treatment, leading to poor adherence. Many patients found the need for regular intravitreal injections and monitoring visits challenging, particularly those with multiple chronic conditions. Almost half of patients (48.4%) cited transportation difficulties as a barrier to attending appointments, while 45% of patients reported that their other chronic diseases (such as diabetes and cardiovascular conditions) made it difficult to maintain eye care visits.
Patients also reported gaps in their knowledge and understanding of DME: 28.7% of patients reported not fully understanding their disease or the necessity of ongoing treatment, and 26.3% believed their treatment had already been successful. This misunderstanding led to premature discontinuation of care.
Emotional and financial strain also presented problems for patients. More than 40% of patients felt that their DME treatment placed a burden on their caregivers. Cost concerns were particularly significant in lower-income regions, where out-of-pocket expenses affected treatment continuity.
Most healthcare providers (78%) cited poor adherence within the first year of treatment as a major issue. Specifically, they described scheduling difficulties due to high patient volume, limited resources for patient education and counseling, and administrative burdens related to reimbursement and financial assistance programs as their biggest problems. Between 19% and 37% of providers and staff noted they would like to receive training for each aspect of patient care.
Patients and providers agreed that extending the interval between treatments, without compromising vision, would significantly reduce treatment burden. The use of longer-acting anti-VEGF agents and emerging sustained-release therapies (ie, faricimab or aflibercept for DME, which have shown 16-week and 20-week intervals between treatments, respectively) could improve adherence by reducing the frequency of clinic visits.
More dedicated time for patient-provider discussions could help set realistic expectations for long-term disease management. Digital health tools, telemedicine, and educational materials could improve disease awareness and self-management.
Slightly more than half of patients (50.1%) indicated that appointment reminders (calls, texts, or apps) would help them adhere to treatment, but travel support and financial assistance programs remained particularly important in low-income regions.
Caregivers who struggled to take time off work to accompany patients to appointments could be helped with “caregiver networks, or information packs for caregivers’ employers (and indeed for patient’s employers) to explain why patients need to be accompanied to regular appointments [because they] would help patients to feel less of a burden to their caregivers, especially as in many cases they are direct relatives,” the researchers noted.
Limitations to the study included possible bias from self-reported data. Communication limitations could have affected participation, as could data collection during COVID-19. The results were also based on an unvalidated survey for patients with diabetes.
“A treatment that is discontinued or not started at all can have no benefit,” the researchers wrote. They concluded with a summary of the areas that could use improvement: “Improving conversations between provider and patient, providing appropriate educational materials and access to these for patients, facilitating better coordination of appointments, increasing uptake of therapies designed to lengthen treatment intervals, and helping caregivers to be more involved in patients’ treatment all serve to optimize vision outcomes, improve adherence to treatment, reduce appointment burden, and ultimately improve clinic capacity.”
Funding information and other acknowledgements can be found in the published research.