NCBI, (National Council for The Blind of Ireland) recently launched research into the experiences of patients who have been diagnosed with Wet Age-Related Macular Degeneration (AMD) in Ireland.
AMD is the most common eye condition affecting people over the age of 50 in Ireland.[i] About 10 to 15% of people with a diagnosis of AMD go on to develop Wet AMD which can develop very quickly, causing serious changes to central vision in a short period of time, over days or weeks.[ii]
- More than 1 in 4 patients (27%) waited over six months for a Wet AMD diagnosis. Of those who could recall, 90% of private patients were seen within 6 months whereas just half (52%) of public patients were seen within 6 months.
- Of the patients who could recall, treatment commenced sooner for private patients than public patients. On average, private patients began treatment within 3-6 months compared to 6-12 months for public patients.
- Almost 4 in 10 patients (37%) had reduced their daily activities because of their Wet AMD diagnosis.
- 69% of patients stated their involvement with their wider community had decreased since being diagnosed with Wet AMD.
- Almost three quarters (73%) of patients reported they experienced stress to some extent about their condition, and 69% were worried they might lose their remaining vision.
- Almost 1 in 2 patients (49%) experience symptoms of depression to some extent due to Wet AMD.
- 80% of patients were receptive to receiving vision rehabilitation supports from NCBI in their community.
Aaron Mullaniff, NCBI, Deputy Chief Services Officer said,
“NCBI undertook this patient research project as we are seeing consistent growth in demand for our rehabilitation services amongst the over fifties. It is vital to get an insight into the health experiences of patients being diagnosed with the condition to help us better understand their needs, and to allow us to plan future community-based rehabilitation services and interventions.”
The project was led by Forum Research & Facilitation, a research company and the research itself began in 2019 and concluded in early 2020 pre-COVID, with over 120 patients participating through telephone interviews; face to face meetings and an online questionnaire. Based on the research findings, NCBI is making the following key recommendations to Government to improve the health outcomes and the patient experience for those diagnosed with Wet AMD.
- Meaningfully and consistently invest in national vision rehabilitation services for patients experiencing Wet AMD.
- Implement the recommendations of Sláintecare and the Primary Care Eye Services Review Report (2017), which contains plans for the roll out of personalised and community-based Primary Eye Care Teams, aiming to deliver high quality, safe and consistent services for patients within the community and reduce the burden within the acute setting, leading to improved and timely access to supports.
- Improve the integration of rehabilitation services into the patient pathway by considering NCBI’s community-based teams in the roll out of the HSE’s proposed Primary Eye Care Teams.
- Support increased access to community-based services by funding and embedding NCBI’s Eye Clinic Liaison Officers across all major hospital ophthalmology clinics by the end of 2021.
- Fund targeted public awareness campaigns on AMD and related conditions highlighting the importance of regular eye checks, particularly for people over the age of 50 within the Irish population.
- Develop guidelines to stipulate a clinical timeframe to prompt access to treatment from diagnosis, building on an improved model of care for provision of Wet AMD services akin to the UK derived NICE Guidelines for late AMD.
Mr Mullaniff added;
“It was striking to note the delay in receiving a diagnosis of Wet AMD, with no surprises that private patients were less likely to experience avoidable sight loss. Unfortunately, these delays then result in further delay in referral to critical vision rehabilitation services like NCBI. During this period, people are left to make the best of it, at a time when a condition like Wet AMD heavily impacts on someone’s independence and quality of life – things like remaining in employment, reading, writing, travelling independently and recognising faces become difficult.
More timely referrals to NCBI, would mean our multi-disciplinary teams could offer earlier intervention, supports and tailored strategies to empower patients with Wet AMD to adjust to their sight loss, maintain their independence and participation in society. For starters, it is imperative the government embeds NCBI’s Eye Clinic Liaison Officers into all major eye clinics across Ireland to ensure that patients receive the help they need at the point of diagnosis and are no longer left in limbo.”
Maria McAuley, research participant said;
“Up to 18 months ago, I was not aware of AMD, until I woke one morning to suddenly realise I could not see properly, and within four days I was diagnosed with Wet AMD. This diagnosis turned my world upside down both in a practical and emotional sense. Initially, despite the best efforts of the hospital I attended, I felt very alone, isolated and uncertain on what this diagnosis would mean for me. Thankfully, a few weeks later one of the nurses (almost by accident), put me in touch with NCBI and from that moment onwards I began to feel less uncertain and isolated.
NCBI are at the end of the phone to provide me with practical and emotional supports to allow me to regain my independence and confidence. The Government needs to sufficiently resource ophthalmic services and organisations like NCBI to help people like me adjust to my new reality. I dread to think what my life would be like without the support and information NCBI has provided.”
According to Carsten Schiller, Managing Director, Bayer, the life sciences company which supported the research;
“Given Ireland’s ageing population, the numbers living with AMD are likely to rise significantly in the years ahead, placing further strain on ophthalmology and rehabilitative services. It is important we plan now for a more strategic and patient centric approach to the diagnosis, treatment and awareness of wet AMD, complemented by timely community-based rehabilitation services and interventions.”
Read the full research report here Wet AMD Report Accessible Dec 2020