Author: Focke Ziemssen (Germany)
Co-authors: David Wong, Tien Yin Wong, Jane Barratt, Conor Donnelly, Bora Eldem, Robert P. Finger
Purpose
Long-term outcomes of management of neovascular age-related macular degeneration (nAMD), diabetic retinopathy (DR) and diabetic macular edema (DME) may be impacted by non-adherence and non-persistence to anti-vascular endothelial growth factor (anti-VEGF) injections. This survey, part of the nAMD Barometer programme, aims to better understand the factors for suboptimal adherence and non-persistence from the perspectives of patients, healthcare professionals (HCPs), and clinic staff.
Setting/Venue
A survey of patients, HCPs, and clinic staff with the aim to recruit approximately 100 clinics from more than 20 countries in Europe, North America, South America, the Middle East, Africa, and the Asia Pacific region.
Methods
An online clinic primer questionnaire, completed by responsible administrators (or equivalent) at clinic enrolment, comprised of 21 questions relating to clinic-level data/characteristics, including number of patients treated, average wait times/delays, and patient-support programs. Following the completion of clinic primers, paper-based multiple-choice questionnaires (including 4-point Likert-scale questions) will be completed anonymously by patients receiving/having previously received anti-VEGF injection therapy, HCPs prescribing/administering anti-VEGF treatment, and clinic staff who do not prescribe/administer anti-VEGF treatment, but otherwise interact with patients. Patients will complete a 38-question survey exploring personal characteristics, disease information provided at diagnosis, opportunities and challenges to treatment adherence/persistence, and treatment experiences, expectations, and burden. HCPs will complete a 34-question survey, and clinic staff a 22-question survey; both explore personal and practice characteristics, depth and frequency of discussion with patients, setting of treatment expectations, opportunities for, and challenges to, treatment adherence/persistence, and opportunities for improving outcomes. ‘Non-adherence’ was defined as missing (by ≥2 weeks) two or more visits within 12 months, and ‘non-persistence’ was defined by non-attendance (or no scheduled appointment) in the prior 6 months. An interim analysis of the available clinic primer data, as of 18 July 2021, was conducted to review the proportion of adherence/non-adherence and of persistence/non-persistence.
Results
By 18 July 2021, 31 clinics had responded to the clinic primer, and this interim analysis of the clinic primer results is based on these clinics. 51.6% of clinics reported they had previously completed audits assessing whether patients adhere to scheduled appointments. Clinics observed and estimated higher rates of adherence in patients with nAMD compared to those with DR and DME. Multiple choice questionnaires will ask patients whether other chronic health conditions make it difficult to manage their appointments, if travelling to the clinic is difficult (because of ability/distance/cost), whether they worry about changes in their vision until their next appointment if they do not receive an injection at a particular visit, or whether it is difficult for the patient’s accompanying person to attend appointments (amongst other questions). HCPs and clinic staff professionals will be asked to assess the extent of non-adherence and non-persistence in their own clinics. They will also be asked to provide their views of patients’ challenges associated with managing their disease, and on different strategies to better support patients with nAMD/DR/DME, such as treating both eyes on the same day for those patients affected bilaterally, or the opportunity for patients to join a peer-to-peer support group.
Conlusions
To our knowledge, this survey is the largest initiative of its kind, and will provide detailed and systematic data on the challenges and opportunities for managing nAMD/DR/DME, including comprehensively evaluating factors for non-adherence and non-persistence to anti-VEGF treatment. There are 61 clinics enrolled, and further data from all primers, and the patient, HCP, and clinic staff questionnaires will be reported when available. The analysis of available clinic primer data, and the full survey results, will inform future nAMD/DR/DME-focussed initiatives designed to improve patients’ experiences of their disease management, including those intended to enhance long-term adherence and persistence to anti-VEGF treatment.
Financial Disclosure
Focke Ziemssen: Consultant: Alimera, Allergan, Bayer, Novartis; Speaker fees: Alcon, Alimera, Allergan, Bayer, Heidelberg Engineering, Novartis. David Wong: Grants/research support: Bayer, Novartis, Roche; Consultant: Alcon, Allergan, Bausch Health, Bayer, Novartis, Topcon, Zeiss; Minor equity: Arctic DX. Tien Yin Wong: Clinical trial grants: Allergan, Bayer, Boehringer-Ingelheim, Genentech, Merck, Novartis, Oxurion (formerly ThromboGenics), Roche, Samsung Bioepis, NMRC Singapore, Novartis Singapore; Consulting fees/travel support/review fees/consultant fees: Allergan, Bayer, Boehringer-Ingelheim, Genentech, Merck, Novartis, Oxurion (formerly ThromboGenics), Roche, Samsung Bioepis; Stock: Plano, EyRIS. Jane Barratt: Nothing to disclose. Conor Donnelly: Nothing to disclose. Bora Eldem: Consultant: Bayer, Novartis, Allergan. Robert P. Finger: Grant: Novartis, CentreVue, Heidelberg Engineering, Zeiss; Consultant: Novartis, Bayer, Roche/Genentech, Ellex, Alimera, Allergan, Santhera, Inositec, Opthea; Support for travel: Novartis. Anat Loewenstein: Consultant: Allergan, Bayer, Beyeonics, Forsight Labs, Notal Vision, Novartis, Roche. Michelle Sylvanowicz: Employee: Bayer Consumer Care AG. Francisco J. Rodríguez: Consultant: Bayer, Novartis, Roche; Speaker: Bayer, Novartis, Roche; Research funds: Novartis. Funding: The survey was funded by Bayer Consumer Care AG, Pharmaceuticals, Switzerland. Medical writing support was provided by ApotheCom and funded by Bayer Consumer Care AG, Pharmaceuticals, Switzerland.
Comments
Important add below co-authors: 7. - Anat Loewenstein: Department of Ophthalmology, Tel Aviv Medical Center, Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel 8. - Michelle Sylvanowicz: Bayer Consumer Care AG, Basel, Switzerland 9. - Francisco J. Rodríguez: Department of Ophthalmology, Fundación Oftalmológica Nacional and Universidad del Rosario School of Medicine, Bogotá, Colombia
