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A qualitative study in Denmark explores the adherence of patients with nAMD to their treatment regimen despite various barriers, including access to care and poor health literacy.
New research offered insight into the management of neovascular age-related macular degeneration (nAMD) among an older population in Denmark, highlighting patient-reported barriers affecting treatment adherence.1
The qualitative study identified 5 main themes that elucidated the primary aspects of a patient’s treatment experience, including compliance with intravitreal treatment, the role of family members as both facilitators and barriers, treatment commute, in-hospital barriers, and preventive health literacy.
“By recognizing and addressing the identified themes, healthcare professionals can work towards providing more comprehensive and patient-centered care, ultimately leading to improved outcomes and enhanced quality of life for patients with nAMD,” wrote the investigative team, led by Benjamin Sommer Thinggaard, a physician and PhD student at the institute of clinical research, University of Southern Denmark.
For nearly 2 decades, anti-vascular endothelial growth factor (VEGF) therapies have revolutionized the treatment of retinal diseases, leading to significant reductions in new cases of blindness among individuals ≥50 years old. Intravitreal injections are often frequent, and treatment requires continuous monitoring, creating difficulties for elderly and visually impaired patients.2
Prior literature has linked a significant number of patients with nAMD to treatment discontinuation, but the reasoning remains unknown. Barriers to care could include insufficient knowledge about the disease and treatment, long distances to the clinic or hospital, or the need for frequent visits.
Thinggaard and colleagues set out to investigate the patient-reported barriers to the recommended treatment for nAMD and its impact on a patient’s quality of life using a qualitative exploratory design.1 The design involved semi-structured interviews with individual patients (n = 17) or with patients and relatives in a dyadic setting (n = 4) to understand the collaborative effect of the treatment process from different perspectives.
Investigators noted data saturation was achieved after conducting the 21 interviews between March to December 2022, considering them sufficient to capture the range of patient perspectives related to the nAMD treatment experience. Among the patient populations, the median age was 79 years and 8 patients had nAMD affecting one eye, while 13 patients had it in both eyes. Before the interview, a single patient had discontinued treatment for personal reasons, while the rest continued to receive regular intravitreal treatment.
Overall, the patients showed a high level of adherence to the recommended treatment, despite encountering various barriers, and no patient indicated a desire to deviate from the recommended treatment course. Some patients expressed their unawareness of the underlying pathological mechanisms of nAMD and the treatment effect of VEGF inhibitors. Others indicated the adverse impact of the intravitreal therapy on their overall well-being, including concerns about the negative progression of the disease, but persisted with compliance to the therapy.
Another identified theme relayed the dual role of relatives and their potential influence on the treatment course. The role of relatives could be a facilitator, in providing support and assistance in attending treatment appointments, or as a barrier, limiting the patient’s ability to access and adhere to treatment. The impact of relatives was often dependent on access to available resources, as well as the ability of certain relatives, including a partner or parent, to support the patient on their treatment journey.
The study also examined the role of a treatment-related commute in limiting the acceptance of recommended treatment among older, more vulnerable individuals. Due to the variation in the proximity of patients to the treatment site, the perception of whether a long commute served as a barrier, or a positive aspect significantly varied among the population. Investigators noted patients may also need to account for quality of care and familiarity with the hospital when weighing the benefits and drawbacks of relocating treatment closer to their residence.
Organizational variations in how hospitals schedule patient appointments, from scheduling appointments for the next treatment during the check-up or communicating the next appointment digitally. A lack of direct communication in the process was relayed as a contributor to patients’ unease with treatment and the perception they were required to take on additional responsibility in managing treatment. Some desired more clarity on the overall treatment plan, including timing and scheduling of future treatments.
The sixth and final theme explored the preventive measures implemented by patients to attempt to prevent the progression or occurrence of nAMD in the other eye. Despite these efforts, these patients were indicated to have limited knowledge of the underlying pathological mechanisms of nAMD and the potential preventive effects of interventions. Patients were found to not adhere to the recommended dosage of AREDS-vitamin supplementation to reduce nAMD risk and showed difficulty in understanding the link between smoking cessation and eye health.
“Further research and collaborative efforts among healthcare stakeholders are warranted to build on these findings and advance the field of nAMD management,” investigators wrote.