The European Glaucoma Society (EGS) has spearheaded several initiatives to incorporate patients’ perspectives and priorities into their glaucoma care. GT spoke with Stelios Georgoulas, MBBS, PhD, MSc, FRCOphth, FEBO, PGDipCRS, the chair of the EGS Patient Involvement Project, to learn more about these efforts.
GT: The EGS recently conducted a survey that generated several thousand responses from patients in more than 30 countries. What was the motivation for this survey?
Stelios Georgoulas, MBBS, PhD, MSc, FRCOphth, FEBO, PGDipCRS: This survey was one part of a bigger initiative. The EGS seeks to understand patients’ unmet needs better and help them become more involved in the entire glaucoma journey. We also want to expand public awareness about the disease.
Truthfully, we lack sufficient understanding of who our patients are, what their needs are, and how they differ across Europe. Currently, patients are underrepresented when it comes to significant decisions made by the health care community. We prioritize research topics and identify areas of focus without adequate knowledge about what matters to patients. Often as clinicians, we may not have time to speak to our patients to understand how they are feeling, what bothers them, and what can be done to improve their situations. Our society truly wanted to understand our patients better.
Greater knowledge will help us to be at the forefront and lead other players (in industry and in the European national health systems) to support patients better in their diagnosis, treatment, and care.
GT: Was anything in particular done to encourage patients’ participation and ensure a positive response rate?
SG: This survey was a society-wide effort. We translated the questions into as many languages as possible and ended up with 11 versions: English, Swedish, Finnish, German, French, Spanish, Norwegian, Italian, Portuguese, Bulgarian, and Greek. Patients attending glaucoma clinics across Europe were provided with a link to complete the survey. The survey was also distributed through glaucoma patient support oganizations. Within 4 months, we received 3,002 responses across 33 countries.
Part of our strategy is to continue to expand the questionnaire to delve into key issues for patients and to distribute the survey through channels that were not used in the initial effort.
GT: Could you share any information on how patients’ responses are being or will be used?
SG: We aim to keep the entire process as patient-centric as possible. In April 2023, we set up an Experts by Experience (EbE) Special Interest Group (SIG) made up solely of glaucoma patients to ensure that this initiative is fully patient-led. The mission is to have patients take ownership of the glaucoma journey from the start, with support from our EGS network, infrastructure, and resources. This interest group will help give glaucoma patients a stronger voice on care pathways, treatment, and research, and it aims to educate health care players on the patient’s perspective. Such an initiative aims to promote collaboration between EGS and European patient organizations and to create structured patient communication channels across Europe, with EGS acting as an umbrella.
Some key initiatives of the SIG will be to create new patient support organizations in Europe, to support and collaborate better with existing ones, to work closely with national glaucoma doctor organizations, and to improve the patient’s journey and increase patient involvement. Another important undertaking of the SIG will be to provide feedback on the work produced by the EGS committees and task forces and to share patients’ views on key outputs of these groups.
GT: Are there any key findings you can share? Do any trends stand out?
SG: The survey responses confirm some points that we clinicians had already suspected to be true, but they also present some interesting insights.
A majority of the respondents were generally satisfied with their knowledge of glaucoma, but that knowledge did not always come from their health care professionals. Instead, patients received education from sources such as the Internet, patient organizations, and family members.
Levels of patient satisfaction varied from country to country, but some common themes emerged. Generally, patients wanted more information on their diagnosis and treatment options. They wanted easier access to up-to-date information on medical advances. They also wanted knowledge on all treatment alternatives, which they do not currently get from their health care providers.
When asked what they would like to improve, about 20% of respondents indicated that communication from their doctors needs to be improved. They suggested that their encounters include explanations of their condition, treatment options and risks, and alternative treatments; a discussion of the latest research findings; and advice on managing daily activities and administering medication. They also wanted their appointments scheduled at shorter intervals and for their visits to be free of changes or delays. They wanted more consistent access to their ophthalmologist, instead of seeing a range of other clinicians.
In terms of research, the biggest priority for this group of respondents was how to achieve early disease detection and how to diagnose glaucoma better and faster.
Given this feedback, one tactic to enhance the patient’s journey is to improve information sharing and communication by doctors. Another tactic is to get patients more involved in their local patient organizations, through which physicians can help share information and build awareness. A total of 87.1% of respondents reported thinking that such organizations are helpful (in Sweden, respondents stated that they participate more in their local patient organizations' activities than respondents in other European countries).
GT: Is this EGS patient survey ongoing, or are there any other forthcoming initiatives designed to continue collecting and using patients’ feedback?
SG: Through the Patient Involvement Initiative Task Force and the EbE SIG, the EGS is working to capture more feedback from patients and doctors. At the 2024 EGS congress in Dublin, the EbE SIG distributed a survey to doctors that focused on how they interact with patients during their visits, what information they provide, and how they ensure that patients understand the information presented. As a result of this work, a guide has been created by patients on how the consultation should be organized. The EbE SIG provided the following list of suggestions to doctors:
1. Clearly explain glaucoma and options for its treatment.
2. Offer lifestyle suggestions and detail available assistance.
3. Emphasize the importance of controlling eye pressure.
4. Provide detailed instructions on eye drop administration.
5. Discuss the pros and cons of surgical treatments.
6. Address glaucoma’s connection to other health issues.
7. Encourage patients to inform work, friends, and family.
8.Inform patients about glaucoma support organizations and resources.
GT: The EGS recently published a study on research priorities for glaucoma care, which included patients’ input. Can you share more about the objective of this work and its importance?
SG: The goal of health research is to improve patient care and outcomes. Thus, it is essential that research address questions that are important to both patients and clinicians, not just clinicians. The aim of this study was to develop a list of priorities for glaucoma research by involving stakeholders from different countries in Europe. We used a three-phase method, including a two-round electronic Delphi survey and a workshop.
The clinician and patient electronic surveys were conducted in parallel and independently. In phase 1, the survey was distributed to patients, EGS members, and ophthalmologists with expertise in glaucoma care. They were asked to name up to five research priorities. In phase 2, participants were asked to rank the questions identified in phase 1 using a Likert scale. Phase 3 included a 1-day workshop for patients and clinicians. The objective was to reach a consensus on the top 10 research priorities.
This work represents our view that patients should be more involved in making decisions that are relevant to them and that their views should influence where support and funding are funneled.
