Millions Of People With Wet AMD Face Blindness, Social Isolation And Psychological Ill Health

Main Category: Eye Health / Blindness
Also Included In: Psychology / Psychiatry;  Public Health;  Clinical Trials / Drug Trials
Article Date: 21 Oct 2007 - 0:00 PDT

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Two million people across Europe face the daily blight of sight loss, social isolation and psychological illness as a result of wet age-related macular degeneration (wet AMD), with 90 per cent of people interviewed reporting that receiving treatment would have a positive impact on their quality of life (QOL), according to new European research released today.1 This 'first ever' research looked at the daily impact of the disease from the recently diagnosed and chronic patient perspective.

The AMD Alliance International (AMDAI) research catalogues the devastating and cumulative effect that loss of sight has on all aspects of people's QOL, irrespective of their sex, nationality, culture or their socio-economic background. It shows that nine out of ten sufferers report having a poorer QOL as a result of wet AMD and that duration of disease does not diminish its impact. In fact, those living with the disease longest claim the poorest QOL.1 AMDAI and its member organisations are calling for increased support within the community and greater access to proven treatments that can maintain and improve sight for people with wet AMD.

Don Curran, Chairman of AMDAI said: "This research shows clearly that losing your sight turns your world upside down, whoever you are, wherever you are. It doesn't matter how important you were or what job you did before, with wet AMD your whole life changes."

"This disease can lead to sight loss within three months, so people with wet AMD should not have to wait for treatment. We should be looking at disease prevention and greater access to proven treatments, vision rehabilitation services, low vision devices and counselling advice for all who need it as quickly as possible."

The first ever European research looking at the wet AMD patient perspective

The AMDAI patient research was developed and conducted by AMDAI and its member organizations across Europe, in partnership with Ipsos MORI Health, a leading international research agency. It was conducted in two phases, qualitative followed by quantitative, and included patients with wet AMD who had experienced visual loss due to the progression of the disease. The research involved 800 people with wet AMD (200 per country) across France, Germany, Italy and the UK.

The impact of wet AMD on 23 aspects of QOL, together with the importance of these aspects to the patient, was measured using the MacDQOL questionnaire.2 The EQ5-D3 instrument was employed to assess the patient QOL domains and sense of well-being, enabling comparisons of wet AMD with a range of different disease states. Patients were also given the PRIME-MD PHQ-2, a two-question screen for depression.

Wet AMD affects all areas of patients' lives

Patients were asked how wet AMD affected many aspects of their life from household chores and hobbies to finances and the importance of these effects to them individually. Sufferers claim that losing their independence and no longer being able to work, in either a paid or a voluntary capacity, have the most serious impact on their QOL.[i]

Two thirds (66 per cent) of people with wet AMD struggle to perform even the simplest daily tasks that enable people to live independently including housework, studying, shopping, enjoying leisure activities and interests such as reading, watching TV, listening to the radio or participating in hobbies. Even the simplest of tasks are deemed very difficult as a result of wet AMD. A third (32 per cent) of wet AMD patients are unable or struggle to dress or wash themselves, compared with a quarter (24%) of people who have suffered a Cerebrovascular Accident (stroke) or brain injury in an alternative study, using the same subscales.4

Eighty six per cent reported that they would be able to get out and about better if they didn't have wet AMD, including getting around on foot or by transport. The effect on mobility (at 51 per cent) reported by wet AMD patients is comparable with that experienced by people with rheumatoid arthritis (56 per cent)5 and Chronic Fatigue Syndrome (52 per cent)4,6 in an alternative study, using the same subscales. However, it is not only that they cannot perform these daily tasks any more that affects their QOL, but also the frustration that they experience at having to ask others for help or just managing without. Eighty three per cent of wet AMD patients report their frustration with being forced to rely on others. They also report being unable to help others - no longer able to look after grandchildren or offer voluntary help for charitie which seriously affects family, friends and social relationships and confirms the wider impact of wet AMD.

According to one patient: "I abandoned my studies because it was no longer possible to read all the books. I gave up the Samaritan telephone service because I would have had to drive, and I miss it quite a lot"

The research also measured the psychological impact of wet AMD and confirmed that patients with the disease were more likely to experience feelings of "isolation" and "helplessness". Sixty per cent report anxiety and depression, which is more than that reported by people with cancer (50 per cent)7 and is comparable with that experienced by stroke patients (61 per cent)4,8 and severe mental illness (54 per cent)4,9 in an alternative study, using the same subscales. Some patients report being at risk of suicide, describing themselves as "useless", "inadequate" and "an embarrassment".

According to one patient: "I was obliged to take anti-depressants because I couldn't sleep for worrying. It wasn't a minor affair for me I was completely panic stricken."

According to Dr Frank Holz, Professor of Ophthalmology, University of Bonn and member of the AMDAI Patient Perspective Research steering committee.

"New, effective treatments, such as anti-VEGF therapies, which maintain and restore vision are available which will help reduce the enormous burden of wet AMD."

The AMDAI research clearly shows that 90 per cent of people with wet AMD believe that their lives would improve if they received treatment. The AMDAI and its member organisations believe that it is time to address the devastating effect of this disease, ensuring access to proven treatments rehabilitation and support services are provided to help people manage the impact of wet AMD on their everyday lives.

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