Addressing the opportunities for improvement raised by patients with DME, providers and clinic staff could increase patient adherence to treatment, reduce appointment burden and improve clinic capacity. Photo: Chen X, et al. Ophthalmol Sci. July 18, 2024. Click image to enlarge.

Chronic retinal disease therapy imposes various challenges (including administrative, clinic, social and patient-related factors) that can often result in high patient and clinic burden, and contribute to suboptimal visual outcomes. In a recent survey, researchers sought to understand the challenges associated with clinical management of diabetic macular edema (DME) from the perspectives of patients, healthcare providers and clinic staff, to identify opportunities for improvement. They found many, such as appointment burden, expectations for treatment and difficulty traveling to the clinic/practice. The team’s paper on the work was recently published in Ophthalmology and Therapy.

Surveys were sent to a total of 5,681 individuals— 3,752 DME patients, 680 providers and 1,249 clinic staff—in 78 clinics across 24 countries on six continents, representing a diverse range of individuals, healthcare systems, settings and reimbursement models. Data included patient characteristics, challenges with appointment attendance, treatment experiences and opportunities to improve support. Provider and clinic staff surveys asked similar questions about their perspectives; clinic characteristics were also captured.

This survey found challenges to optimal care include too many appointments, difficulties in traveling to the clinic or arranging adequate support to travel, out-of-pocket costs, office/parking fees and long wait times. Patients generally wanted more in-depth discussions with their provider, which would improve expectation-setting. The top five patient concerns were:

• I am concerned about being a burden to family/friends (52.5%)

• The frequency of treatment can be too much (51.7%)

• The personal costs associated with the drug itself are challenging (49.2%)

• Limitations on number of treatments covered by insurance makes it difficult for me (37.7%)

• I am fearful of the treatment procedure itself (37.0%)

Improvements the authors suggest include more effective use of clinic staff to assist with patient education so that providers can focus their time on discussing treatment efficacy and disease prognosis, as well as better staff training.

“Furthermore, providing additional diabetes care services within the eye clinic, and vice-versa, could improve clinic capacity; however, this requires significant coordination and infrastructure,” the authors wrote in their paper for the journal.

Patient uncertainty around treatment expectations and their inability to ask questions were key challenges many. Many did not receive written or digital information about their disease and its treatment; frequently, providers and clinic staff said that was unavailable.

The survey also found that many caregivers struggle to take time off work to accompany patients, so support for them (for example, caregiver networks) or information packs for their’ employers (and for patients’ employers) to explain why patients need to be accompanied to regular appointments would help patients to feel less of a burden to their caregivers, especially as many are direct relatives, the researchers noted.

“While data from this survey helped to confirm the importance of many challenges and barriers to patients, it was noted that almost all patients were willing to accept more treatment if they could retain their vision (an opinion shared by almost all providers),” the authors wrote. Patients generally prioritized their treatment, although appointment burden causes frustration and could undermine adherence. Patients would respond favorably to an anticipated reduction in treatment frequency after the first year if communicated to patients, the study authors suggested.