Barriers to adherence to age-related macular degeneration and diabetic macular edema management plans: A multi-national qualitative study

Abstract

Purpose : Research has shown that patients in the real world with neovascular age-related macular degeneration (nAMD) or diabetic macular edema (DME) treated with anti-vascular endothelial growth factor (VEGF) achieve lower vision improvements compared to patients in clinical trials. This has been partly attributed to treatment burden, which can impede a patient’s ability or willingness to follow their management plan (i.e., adherence). This study aims to better understand the treatment experience of intravitreal anti-VEGF injections from the patient, caregiver, and physician perspectives.

Methods : Patients with nAMD/DME treated with anti-VEGF injections, their caregivers, and retina specialists (RSs) participated in 1:1 exploratory phone interviews in Canada, France, Germany, Italy, Spain and the United States. Interview transcripts were analyzed qualitatively to identify concepts related to treatment experience and drivers of and barriers to following a management plan.

Results : We interviewed 62 RSs, 95 patients (49 nAMD, 46 DME) and 79 caregivers (of 47 nAMD, 32 DME patients). In our sample, RSs estimated the non-adherence rate among their patients to range from 0 to 20%. The majority of nAMD patients and approximately half of DME patients reported never missing an injection visit. All respondents reported similar drivers for following a management plan. Treatment effectiveness was reported as a key driver by ~30-40% of all respondents. The most commonly reported driver by RSs and patients/caregivers were patient education (34%) and the doctor-patient relationship (~60%), respectively. Various barriers to following a management plan were reported: fear of injection, health-related (vision loss, lack of treatment effectiveness), time and travel-related (waiting time, visit frequency, distance to site), and education-related (lack of understanding treatment purpose and procedures). RSs reported additional barriers (comorbidities, insurance coverage) taken into account when making anti-VEGF prescribing decisions.

Conclusions : There was a consensus among patients, caregivers, and RSs regarding drivers of and barriers to anti-VEGF treatment. New therapies offering improved or longer-acting effectiveness along with enhanced patient education may improve nAMD/DME patient adherence to their management plan and achieve better real-world vision outcomes.

This is a 2021 ARVO Annual Meeting abstract.