At the recent 23rd EURETINA Congress on October 8th in Amsterdam, the Netherlands, Professor Richard Gale, based at the Hull York Medical School, University of York, UK, presented results on patient mental health and caregiver burden in AMD. Prof. Gale told delegates that almost half of patients with age-related macular degeneration (AMD) may have significant depression and anxiety about their disease, and their treatment, and the healthcare system needs to address these concerns to support our retina community. Prof. Gale has called for a consensus statement to address mental health and well-being with impaired vision, highlighting that, “healthcare professionals, patient advocacy groups, industry and policy makers on commitment to proactively address well-being is needed”.
Research on a comprehensive study was recently published by Prof. Gale which concluded that a “coordinated holistic approach to patient care is key to optimizing patient well-being as well as visual outcomes”. Prof. Gale advocated that standardization of quality-of-life studies (QoL) “would assist in establishing whether sustained QoL improvement, rather than prevention of QoL decline, should be a realistic expectation of treatment of nAMD in the longer term”. His research team collected 856 records identified for a systematic review on this topic, showing that 63 studies met inclusion criteria indicating that depression or depressive symptoms were reported in up to 42% of patients with nAMD. Of seven reported studies, there was a statistically significant improvement at the earliest time point measured (month 3–12) and approximately 50% reported sustained QoL benefits at 12 months.
In addition, the literature review also reported findings about caregiver burden including:
- 47% were a child or grandchild and 23% a partner;
- 60% attended all appointments (30% of patients attended them alone);
- 30% said the frequency of visits was inconvenient;
- 80% of patients had five or more medical comorbidities.
At the EURETINA Congress, Prof. Gale commented that. “this will surprise you: the use of quality-of-life and vision-related quality-of-life tools was pretty unsatisfactory really. Patient perspectives are poorly represented often in studies, particularly in neovascular AMD studies. There’s a very heterogenous use of tools and some of them are not validated. There’s often a lack of control groups, and often there’s not a comparison between the patient and physician perspective. So, I asked, are we really understanding with these tools what the burden is?” In summary, Prof. Gale presented that “we don’t measure patient-care reported outcomes consistently in the real world” and therefore much work needs to be improved in the coming years.