Author: Tunde Peto (United Kingdom)
Co-authors: Sally Lanar, Jeremy Lambert, Hannah Lewis, Charlotte E. Kosmas, Mirela Mirt Dabic, Aachal Kotecha
Real world evidence has shown that patients with neovascular age-related macular degeneration (nAMD) or diabetic macular edema (DME) treated with anti-vascular endothelial growth factor (anti-VEGF) therapies 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 aimed to understand the current treatment experiences, satisfaction and barriers to adherence in nAMD and DME from patients’, caregivers’, and physicians’ perspectives in a multinational setting and to suggest how future therapies might improve treatment experience.
This multinational qualitative study was conducted in USA, Canada, France, Germany, Italy and Spain. One-time individual concept elicitation-style telephone interviews with patients, caregivers and retina specialists were conducted between June and October 2020 by trained and experienced interviewers.
Adult patients with nAMD/DME treated with anti-VEGF injections for ≥12 months, their caregivers, and experienced retina specialists participated in 1:1 individual concept elicitation-style phone interviews. Participants were recruited through recruiting databases, physician referrals, and social media for patients and caregivers, and through panels for retina specialists. Interviews were audio-recorded, transcribed verbatim, translated into English when needed, and de-identified to ensure participants’ confidentiality. Interview transcripts were analyzed qualitatively using thematic analysis methods based in the grounded theory tradition to identify concepts related to treatment experience and drivers of and barriers to following a management plan.
Altogether, 62 retina specialists, 49 nAMD and 46 DME patients and 79 caregivers (of 47 nAMD, 33 DME patients) were interviewed. Seventy-nine percent of patients and caregivers reported disruptions in their routine on or the day after anti-VEGF injection. The non-adherence rate estimated by physicians was between 0-20%. The majority of nAMD patients (84%) and nearly 2/3rd of DME patients (63%) reported never missing an injection visit. Doctor-patient relationship (70% of patients, 16% of caregivers and 15% of retina specialists), education (36% of patients, 45% of retina specialists but zero caregivers), and overall treatment effectiveness (35% of patients, 24% of caregivers and 31% of retina specialists) were reported as key drivers for patients to follow management plan. Aspects of treatment leading to patient burden and/or non-adherence could be grouped into 3 main categories: tolerability, logistical parameters and human factors. Side effects were reported as barriers by 67% of patients and 66% of caregivers, but only 26% of physicians. All participant types reported fear or anxiety about injections and frequency of visits as barriers similarly, at 42-54% and 18-26%, respectively. Physicians mentioned travel logistics, comorbidities, and overall treatment effectiveness more frequently than patients and caregivers.
To conclude, this international qualitative study provides valuable insights into areas for improvement within the nAMD and DME treatment experience. New therapies offering improved or longer-acting effectiveness and better tolerability profiles, along with enhanced patient education may improve nAMD/DME patient compliance with their management plan and help in achieving better real-world vision outcomes. It is important to note that the patient sample may underrepresent non-adherent patients who may have been less likely to volunteer to participate in the study. In addition, adherence was derived from patient self-report, asking patients if they had ever missed an injection visit. Therefore, a complementary quantitative study using medical records should be conducted to provide a more accurate assessment of patient adherence. This quantitative study may also help describe the impact of the COVID-19 pandemic on treatment adherence, which might not have been fully captured both in the interview and the analysis.
Tunde Peto: Roche: speaker fee for this abstract Sally Lanar, Jeremy Lamber, Hannah Lewis and Charlotte E Kosmas: Employees of ICON plc; Mirela Mirt Dabic, Aachal Kotecha, Liliana P. Paris, and Iris Van den Brande: Employees of Roche; Brittany Gentile and Gloria C. Chi: Employees of Genentech
Please add below four extra co-authors: Co-author 7 first name: Liliana P. Co-author 7 last name: Paris Co-author 7 affiliation: F. Hoffmann-La Roche, Basel, Switzerland Co-author 8 first name: Iris Co-author 8 last name: Van den Brande Co-author 8 affiliation: F. Hoffmann-La Roche, Basel, Switzerland Co-author 9 first name: Brittany Co-author 9 last name: Gentile Co-author 9 affiliation: Genentech Inc., South San Francisco, CA, USA Co-author 10 first name: Gloria C. Co-author 10 last name: Chi Co-author 10 affiliation: Genentech Inc., South San Francisco, CA, USA