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Millions of people with wet AMD face blindness, social isolation and psychological ill-health

22.10.2007
Urgent action is now required to provide effective care to reduce the progression of this devastating disease

7th International AMD Congress, Marbella, Spain, 19th October 2007: New research1 released today reports that 90 percent of people with wet AMD say receiving treatment for wet AMD would have a positive impact on their quality of life (QOL). Wet age-related macular degeneration, or AMD, is the leading cause of vision loss in the developed world, impacting two million people across Europe with sight loss, social isolation and psychological illness. 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 can be devastating, whoever you are, wherever you are. It demonstrates from a research perspective what I know from a personal perspective - losing your eyesight is tragic, yes, but the mental anguish is so much more tragic, in that it might be avoided or even completely prevented with treatment.

"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.[a]

Two thirds (66 percent) 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 percent) 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 percent 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 percent) reported by wet AMD patients is comparable with that experienced by people with rheumatoid arthritis (56 percent)5 and Chronic Fatigue Syndrome (52 percent)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 percent 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 charities − 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 percent report anxiety and depression, which is more than that reported by people with cancer (50 percent)7 and is comparable with that experienced by stroke patients (61 percent)4,8 and severe mental illness (54 percent)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 Chair 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 percent 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.

The research was funded by an unrestricted educational grant from Novartis Pharma AG.

About AMD

AMD is a degenerative eye disease affecting the macula – the central part of the retina at the back of the eye that is responsible for the “straight ahead” central vision necessary for everyday activities such as reading, driving, telling time or identifying faces. Approximately 25 to 30 million people worldwide are living with the disease.10,11,12

AMD is a continuum of disease that can progress to wet (or neovascular) AMD, a leading cause of severe vision loss in people over age 50 in the Western world.10,11,12 It accounts for about 15 percent of all AMD cases and, if left untreated, most patients will lose significant lines of vision within three months.

The impact of AMD is comparable to that experienced by patients with chronic illness.13 An economic analysis of the public health burden of AMD conducted in Canada showed that mild AMD has a similar impact on QOL as moderate angina; moderate AMD has a similar impact as permanent renal dialysis or severe angina and very severe AMD affects QOL as badly as advanced prostate cancer, uncontrollable pain or a severe stroke that leaves a person bedridden, incontinent and in need of constant nursing care.14


About AMD Alliance International (AMDAI)
The AMDAI is a non-profit coalition of the world's leading vision, research and seniors organizations working together to raise awareness of AMD, of treatment and rehabilitation options and of the importance of early detection. Alliance membership currently comprises 60 non-profit organizations from 22 countries, including world-renowned leaders in ophthalmology, vision rehabilitation, patient and senior’s advocacy, and research.

The mission of the Alliance is to bring knowledge, help and hope to individuals and families around the world affected by AMD through:

o Generating awareness and understanding of AMD

o Promoting the importance of education, early detection, knowledge of treatment and rehabilitation options

o Preserving vision and improving the quality of life of individuals affected by AMD.

In support of our mission, we have developed and continue to implement aggressive international awareness campaigns designed to encourage seniors to have their eyes examined; and mobilise the medical community, insurance industry and key governmental decision-makers to recognise and support AMD as a health priority. Campaigns and tactics include international research, website and hotline development, consumer and trade show participation, speaker's bureau, and educational, media and advocacy campaigns.


REFERENCES
1. Data on file, AMD Alliance International, September 2007
2. Mitchell J, Bradley C. Design of an individualised measure of the impact of macular disease on quality of life: the MacDQoL. Quality of Life Research 2004;13:1163-1175.
3. EuroQol Group. EuroQol-A new facility for the measurement of health-related quality of life. Health Policy 1990;16:199-208
4. Langelaan M, de Boer MR, van Nispen RMA, et al. Impact of visual impairment on quality of life: A comparison with quality of life in the general population and with other chronic conditions. Opthomalogic Epidemiology 2007;14:119-126
5. McPherson, K, Myers, J., Taylor, W., McNaughton, H, Weatherall, M. (2004). Self-valuation and societal valuations of health state differ with disease severity in chronic and disabling conditions. Medical Care, 42, (11), 1143-1151.
6. Myers C, Wilks D. Comparison of Euroqol EQ-5D and SF-36 in patients with chronic fatigue syndrome. Qual Life Res 1999;8(1-2):9-16
7. Pickard AS, De Leon MC, Kohlmann T, et al. Psychometric comparison of the standard EQ-5D to a 5 level version in cancer patients. Medical Care 2007; 45(3): 259-263
8. Dorman PJ, Dennis M, Sandercock P. (1999). How do scores on the EuroQol relate to scores on the SF-36 after stroke? Stroke, 30 (10), 2146-2151
9. Wiersma D van Busschbach J. (2001). Are needs and satisfaction of care associated with quality of life? An epidemiological survey among the severely mentally ill in the Netherlands. Eur Arch Psychiatry Clin Neurosci., 251(5):239–246
10. Klein R, Klein BE, Linton KL. Prevalence of age-related maculopathy. The Beaver Dam Eye Study. Ophthalmology 1992;99(6):933-43
11. Vingerling JR, Dielemans I, Hofman A, et al. The prevalence of age-related maculopathy in the Rotterdam Study. Ophthalmology 1995;102(2):205-10
12. Mitchell P, Smith W, Attebo K, et al. Prevalence of age-related maculopathy in Australia. The Blue Mountains Eye Study. Ophthalmology 1995;102(10):1450-60.
13. Williams RA, Brody BL, Thomas RG, et al. The Psychosocial Impact of Macular Degeneration. Arch Ophthalmol 1998;116: 514-520
14. Brown MM, Brown GC, Stein JD, et al. Age-related macular degeneration: economic burden and value-based medicine analysis. Can J Ophthalmol 2005;40: 277-87

[a] Weighted impact scores of -5.55 and -5.14 respectively, calculated from importance of each item (rated 0 to +3) multiplied by impact of MD on each specific item (rated -3 to +1). The more negative the score, the greater the importance of the impact of that item on QOL to the patient.
Victoria McCann
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