In a recent large-scale global survey, researchers identified significant challenges in the management of neovascular age-related macular degeneration. They survey aimed to understand the perspectives of patients who are currently receiving or who have received anti-vascular endothelial growth factor therapy for neovascular age-related macular degeneration, as well as the views of providers and clinic staff involved in their care.

The study, conducted across 77 clinics in 24 countries, gathered insights from 6425 respondents, including 4558 patients, 659 health care providers, and 1208 clinic staff. It also included a diverse range of reimbursement models. Respondents completed structured questionnaires anonymously and provided insights into patient experiences, barriers to treatment, and potential improvements.

Patients reported significant logistical, financial, and psychological challenges associated with their treatment, Anat Loewenstein, MD, MHA, of the Department of Ophthalmology, Tel Aviv Medical Center, Faculty of Medicine, Tel Aviv University in Israel, and colleagues noted in their recent Ophthalmology in Therapy article.

Nearly half (45.9%) of patients found the frequency of anti-vascular endothelial growth factor (anti-VEGF) injections burdensome, while 44.4% expressed concerns about being a burden to family and friends. Difficulties in traveling to clinics, long waiting times, and uncertainty about the effectiveness of treatment were common concerns.

Additionally, 57.9% of patients worried about vision deterioration between appointments, while 54.5% hoped to avoid injections, and 53.7% incorrectly associated skipping treatment with visual improvement. Many patients (24.8%) reported a lack of understanding about their disease and treatment needs, which could contribute to non-adherence.

Providers and clinic staff echoed patient concerns, particularly regarding clinic capacity constraints, with 62.2% of providers stating that limited resources and high patient volumes made it difficult to deliver optimal care. Many clinic staff members identified the need for improved patient education and communication, which could enhance treatment adherence and satisfaction. 

Indeed, the investigators wrote, “59.0% of providers thought that patients’ non-adherence to treatment was a problem and 79.8% wanted to implement policies to improve adherence and persistence. While 87.3% of providers thought a clinic audit is important in understanding levels of non-adherence and non-persistence, only 24.7% had conducted one to determine attendance and visual outcomes.”

They continued, “Patients considered their eye treatment a priority, and would accept more treatment to keep their vision.” With this understanding in mind, the researchers identified several strategies to improve nAMD management, including:

• Appointment reminders, financial assistance, and transportation services. More than half (50.4%) of patients viewed appointment reminders as extremely important, while 34.9% emphasized the need for transportation support.
  
  
• Reduced clinic wait times and streamlined appointment scheduling. More predictable treatment schedules and increased use of home monitoring tools were suggested to ease the treatment burden.
  
  “From the perspective of the payer, there is a clear benefit in reducing the strain on healthcare resources,” the investigators wrote. “Complementing longer-duration therapies with home monitoring technologies could be key in improving the quality of life of patients with nAMD; the clinic requirement is reduced while empowering patients to monitor their disease.”
  
  
• Better educational materials and clearer communication about treatment expectations. The researchers explained: “Patients that do not understand the goals of their treatment could likely become dissatisfied (for example, many patients expect their vision to significantly improve with treatment, whereas maintenance of vision might be a more suitable goal), and become non-adherent; therefore, expectations must be carefully set early in the patient’s treatment journey.” While 48.5% expected vision improvement in their first year of treatment, only 28.6% were informed that stabilization might be a more realistic goal.
  
  The investigators noted additional hurdles in this area; specifically, a lack of consensus on how and when to inform patients about their disease or treatment. They suggested that guides for patients and providers could be helpful, provided that they are made available and accessible to a variety of health literacy levels in a range of multimedia. 

The researchers took steps such as closed questions, Likert scale elements, and independent language translation validation to reduce bias in their survey, but noted that patients’ healthcare access and literacy must still be considered with their findings. Data was also collected during COVID-19, they explained.

Author disclosures and conflicts of interest are declared in the published research.