Photo Credit: Nuthawut Somsuk

Addressing gaps in patient-provider communication about age-related macular degeneration could improve outcomes as well as patient and provider satisfaction.

Many patients with age-related macular degeneration (AMD), the most common cause of irreversible visual impairment in people aged 50 and older, report feeling that they lack information about the condition, treatment options, potential outcomes, and available visual aids and low-vision rehabilitation.

Findings from the mixed-methods review of patient perspectives published in Survey of Ophthalmology also showed that patients did not feel engaged in shared decision-making with their clinicians.

In their review, which included 31 studies on the perspectives of patients with AMD in high-income and upper-middle-income countries, Mariska Scheffer, MSc, and colleagues found communication gaps around lack of attention to treatment burden, low patient involvement in treatment decisions, and restricted time to discuss their needs and preferences. As a result, many patients tended to ask fewer questions and were concerned about the lack of support from clinicians.

Communication Gaps Throughout Care Journey

As Scheffer and colleagues reported, patients expressed these concerns:

• Inadequate information about the disease. In one study, 89% of patients with AMD said they would prefer to receive information from their ophthalmologist than from the Internet, videos, or printed materials. In a different study, around one-third of patients did not know which form of AMD they had, and only about half were familiar with the Amsler grid for self-monitoring. Only 17% of patients in a third study reported that they knew that the disorder was chronic and required long-term treatment. In a fourth study, only 44% of patients were told what to do if their eyesight suddenly deteriorated.
• Inadequate information about treatment. Patients were given inadequate information about tests, scans, anti-VEGF injections, and follow-up care, and little opportunity to discuss procedures, leading to anxiety and discontinuation of treatment. Many patients reported that clinicians presented only one treatment option without explaining others and the consequences of not accepting or discontinuing treatment. Study findings showed that patients felt rushed to make treatment decisions and often passively left treatment decisions to their clinicians. The vast majority knew they should contact their clinician immediately if they had adverse effects, but in one study, patients reported they were unaware of possible adverse effects, including infection.
• Inadequate information about nutrition and lifestyle. In one study, only 21%, 48%, 37%, and 36% of patients, respectively, correctly described how diet, supplements, hypertension, and smoking affect AMD. In another study, 90% of patients reported not having been advised to quit smoking. In another, many patients who qualified for supplements were unaware of them and their reasons for use or they took the wrong dose.
• Inadequate information about visual aids and rehabilitation. Across two studies, the number of patients who were aware of low-vision rehabilitation services ranged from only 24% to 71%.

“Patients have differing information needs before, after, and in the long-term following diagnosis. This emphasizes the need for a more patient-centered approach to future educational services for patients with AMD,” Scheffer and colleagues noted.

“It is important that patients are adequately informed about the condition, available treatment options, and potential consequences, and feel confident to ask questions and deliberate on treatment options appropriate to their personal backgrounds and preferences,” they continued.

An Ophthalmologist’s Perspective

Physician’s Weekly (PW) spoke with Thomas Mendel, MD, PhD, a vitreoretinal surgeon and clinical assistant professor of ophthalmology and visual sciences, about this communication disconnect, how it affects patients, and the obstacles that hamper communication and lead to suboptimal care.

PW: Are clinicians aware of this communication gap?

Dr. Mendel: Sadly, the results are not entirely surprising, but they serve as a reminder to retina physicians. With an increasing documentation burden, decreasing reimbursement, and ever more complex insurance-specific treatment paradigms, retina physicians may feel more time pressure than they’ve felt in the past. In this situation, it can be easy to make time by shortening face-to-face interactions with patients and conferring on them a more passive role.

As regulations in documentation, reimbursement, and intravitreal injections change and become more complex, I expect that detailed surveys of patient experiences may also change. Insurance providers often require specific therapies, even if the clinicians would choose different options for active disease. While this article points out that patients may feel a sense of passivity in the decision-making process, given the current state of AMD treatment, even physicians can feel that way.

Why is this study important?

This study provides a thorough and well-considered review of patient-doctor communication regarding a specific and widespread disease. The disease’s visual impairment, the typical age range of patients being treated, and a variety of other factors can challenge patient-doctor communication.

How could the findings improve patient care?

Hopefully, these findings will remind clinicians about the cumulative impact of their communication with patients with AMD. Tracking the causes of patient-physician communication challenges over time might prove illuminating.