Data highlights need for educational materials and training resources in DME and DR.
Reviewed by Prof. Anat Loewenstein
If left untreated, diabetic macular edema (DME) and diabetic retinopathy (DR) can lead to severe visual impairment. It is therefore imperative to understand the challenges clinicians and their patients routinely encounter in the management of these conditions, according to Prof. Anat Loewenstein.
Prof. Loewenstein is based at the Department of Ophthalmology, Tel Aviv Medical Center, Tel Aviv University, Tel Aviv, Israel. She is co-chair of the Bayer-sponsored Barometer Program, which is conducting a global survey of patients, physicians and clinic staff to identify these challenges, and the opportunities to improve outcomes for patients. This interim analysis included data from 16 countries across North America, South America, Europe, Africa, the Middle East and the Asia-Pacific region (see Figure).
Patients were asked to complete an anonymous questionnaire which delved into their experiences with obtaining a diagnosis, attending appointments and receiving treatment. Their personal characteristics were collected and they were asked about opportunities where they felt better support could have been provided.
In addition, patients with DME were asked about their adherence to treatment. Physicians and clinic staff were asked to complete similar questionnaires and the two types of responses were compared in order to obtain an idea as to where the patient and clinician experiences converged or diverged.
In total, 2,546 surveys were completed in the interim analysis, comprising 275 providers (those administering and/or prescribing anti-VEGF treatment), 558 clinic staff (those interacting with patients butnot administering or prescribing anti-VEGF treatment), 1,073 patients with DME and 640 patients with DR.
Within the analysis, no statistical comparisons were planned or performed, and the data was reported descriptively. Differences between responses of adherent and non-adherent DME patients were determined by subtracting the percentage of non-adherent patients from the percentage of adherent patients answering each possible response of any individual question on the survey.
According to Prof. Loewenstein, the results showed that patients did not feel they had sufficient information to help them understand their treatment or their disease. More than half (55%) of DME patients did not know how many more treatments they would have in the following 12 months and 50% did not know how long treatment would last.In contrast, 85% of providers reported always or regularly discussing how long treatment might be required for, highlighting a potential disconnect in physician-patient communication.
A similar proportion (41%) of patients with DR reported not receiving any information about what to expect with their treatment and this aligned with 53% of DME/DR providers stating that their clinic did not have sufficient educational material to give to patients regarding their condition or what to expect from treatment. Most patients with DME, DME/DR providers and clinic staff (65%, 85% and 89%, respectively) said that they felt it was either extremely or very important to have better educational material available for patients.
When analyzing the differences between adherent and non-adherent patients, the survey found that compared with non-adherent patients, adherent patients found travelling to the clinic easier; did not consider the number of appointments for DME to be overly burdensome; felt that their physician understood the challenges of managing their condition and gave them enough time to ask questions; and felt more comfortable talking to their doctor about their condition and asking for support to help manage it.
From the clinician questionnaires, it became apparent that only 26% of providers and 20% of clinic staff considered themselves fully trained in how to avoid jargon when speaking with patients; 29% and 37%, respectively, said that they would like better training in this area.
Only 40% of providers considered themselves trained to an expert level in using anti-VEGF treatment and just 15% considered themselves experts on the contraindications of anti-diabetic medicines. Finally, 43% of providers rarely or never discussed where to find more information on DME/DR or support services associated with the conditions.
Prof. Loewenstein concluded by stating that this survey is the largest such initiative undertaken to gather unique insights from multiple perspectives on the challenges and opportunities for managing both conditions, and highlighted the need for accessible educational materials for patients to improve access to information, education and guidance. In addition, there is a need for training resources on DME/DR for clinicians to help them to better communicate with their patients.
Prof. Loewenstein said: “Gaining perspectives from patients and clinicians alike will support identifying barriers and possible opportunities to optimize care, hopefully informing and shaping practice and policy not only at a global level, but at national and clinic levels too.” She added that with survey submission drawing to a close, the primary analysis of the survey planned for 2023 is anticipated to provide much more detailed and systemic information which should help to improve the treatment process and outcomes for patients and inform clinical guidelines.