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Using Research to Better Understand Service User Profile
Bláithín Gallagher MPhil, PhD
Desmond Kenny MSc, MBA
Whosoever desires constant success must change his conduct with the times.
Niccolo Machiavelli
Ageing Population
Global population 60+ trebled over last 50 years
1950: 205m; 2005: 606m (15.3%); 2050: 2bn (29.3%)
Greatest growth in oldest old
80+ 2005: 2.7% (88m) to 2050 6.7% (402 m)
100+, 2005: 265.000: 2050: 3.7m (14-fold increase)
100+ UK 1911 100, 2001, 8600, 2031 48,000
Europe "oldest" region in the world.
EU27 Median Age, 2008: 40.4 yrs 2060: 47.9 yrs
EU elderly dependency ratio 2004: 24.5% 2050 52.8%.
Ageing & Vision LossGlobal Population of Blind and Low
Vision 161 million people with vision impairment worldwide – 124m low vision; 37m are blind.– 153 m VI - uncorrected refractive error.– Global population of VI expected to double by
2020
Europe: 2.7m blind; 12.8m low vision.
Vision impairment increases dramatically with age. Approx 4% aged 60+ are thought to be blind. (WHO:1999)
Important Factors
Ageing highly correlated with vision loss
Changing demographics → Increase in VI Population
→ Increased burden on eye care services
Impact of Vision Impairment Personal, Social, Psychological & Economic Imperative that NCBI reviews service user profile
What we noticed
NCBI Service user base increasing 12% year-on-year. HSE income to agency decreasing
Major increase in older service users with acquired vision loss (mainly age related)
Incidence of total sight loss (blindness) among service users reducing
Low Vision predominant among service users.
Interventions & services very different between groups
Service need to change address difference in needs
Important Factors Necessary to Investigate & plan how best the state &
NCBI can address the delivery of services to meet the needs of the growing populaiton of people with low vision while maintaining the more costly services to people who are blind.
Evidence essential to plan for the future.
Need to represent changing trends to government
Need to speak to funders & policy makers in a language that they understand
Research2008 Eyes on the Future (Jackson & O'Brien, et al)
Study of prevalence of vision impairment in Ireland 30,000 (estd) 45 years + Vision Loss in Ireland due to URE
9,500 (approx) legally blind
Figures underestimate the true extent of blindness by 30-40%.
Annual Costs of Sight Loss
Cost of care est'd between €300 & €500 million
Cost of social benefits and productivity losses €100 - €200 million
True cost €140 and €280 million(est'd) due to under-registration
PROJECTIONS
Population of people with vision loss 55+ will increase
Blind (WHO) 43% (2016) 116% (2026) 170% (2031)
Low Vision (WHO) 45% 2016, 125% (2026) 180% (2031)
9
More research was neededWe wanted to forecast trends in the key areas of:
Primary ocular pathologies leading to sight loss AMD, Diabetic Retinopathy, Glaucoma, Cataract.
And
Cost to the state of sight loss from direct medical and rehabilitation and welfare costs to indirect costs of carers, tax foregone and DALYs
Very little statistical modelling of disease done in Ireland
Needed consultants with experience in this area
10
Research Authors
Access Economics (Deloitte)
Leading health economics consultancy
International presence,
Highly regarded for independent, professional and high quality health economics outputs.
Completed five economic cost evaluations and several cost effectiveness analyses
Australia, Canada, Japan, the UK, USA.
Global cost-of-illness study for visual impairment.
peer-reviewed publications
11
2011 Cost of Sight Loss Deloitte Access Economics
Results obtained through a combination of information taken from
NCBI register,
2006 National Disability Survey,
Previous Irish studies of vision impairment, and
Deloitte Access Economics’ estimates of vision loss in other countries
Extrapolation of incidence of sight loss & expected change from international trends with similar populations.
Estimated the prevalence of people with a visual acuity below 6/12.
Estimated the real financial cost of vision impairment as €386 million
12
Three categories of vision loss
Mild vision impairment (6/18 < visual acuity ≤ 6/12)
Moderate vision impairment (6/60 < visual acuity ≤ 6/18)
Blindness (visual acuity < 6/60).
2010 ROI
* 12,995 blind people;
* 54,681 people with moderate vision impairment;
* 157,156 people with mild vision impairment;
* Total 224,832 people vision impairment .
Projected to grow to 271,996 people by 2020,
(including 187,928 people with mild vision loss)
13
Distribution of Blindness by Primary Cause in 2010 (all ages)
2.3%
8.3%
23.4%
62.4%
3.6%
Cataract
Glaucoma
AMD
Other cause
Diabetic retinopathy
2.3%
8.3%
23.4%
62.4%
3.6%
Cataract
Glaucoma
AMD
Other cause
Diabetic retinopathy
2.3%
8.3%
23.4%
62.4%
3.6%
Cataract
Glaucoma
AMD
Other cause
Diabetic retinopathy
2.3%
8.3%
23.4%
62.4%
3.6%
Cataract
Glaucoma
AMD
Other cause
Diabetic retinopathy
2.3%
8.3%
23.4%
62.4%
3.6%
Cataract
Glaucoma
AMD
Other cause
Diabetic retinopathy
14
2011 Cost of Sight Loss Deloitte Access Economics
Estimated total annual cost of vision impairment
€386 million
€117 million in health care expenditure (direct costs) &
€269 million in other (indirect) costs
Health care expenditure,
Value of caregiver time,
Lost productivity (unemployment) due to impaired vision, (est 43% of total financial cost
Efficiency losses due to government-funded eye care
Welfare payments
2020 expected to increase to €449 million (in real terms) (16%)
15
Financial Costs of Vision Impairment and Blindness in the ROI in 2010
30%
27%
15%
28%Health system costs, €116.75 million
Deadweight welfare loss, €104.37 million
Productivity losses, €56.72 million
Informal care costs, €108.25 million
16
DALY Burdens Due to Vision Impairment and Blindness in 2010
3,143
9,296
5,588
510
18,537
0
2,000
4,000
6,000
8,000
10,000
12,000
14,000
16,000
18,000
20,000
Mild vision impairment Moderate vision impairment
Blindness Deaths due to vision impairment or
blindness
All disability and deaths associated with vision
impairment or blindness
DA
LYs
17
What have we done so far with results?
Emphasised to government the necessity of a vision strategy which would recognise and respond to the seriousness of the sight loss issue.
Took the findings directly to Minister Reilly before he launched the findings of the study.
Minister Reilly committed to create a clinical lead in ophthalmology in the HSE and to review the need for a strategy after the patient pathways had been reviewed
18
We stated what needed to be done
Much vision loss can be avoided or treated
reduce the significant personal, social and economic burdens of vision loss in the Republic of Ireland.
More research funding to increase effective prevention & treatment strategies
Elevation of vision health as a public health issue,
Public better informed to maintain ocular health
By investing in the right strategies, the rising trends of vision impairment could be reversed.
19
How else are results being used?
Study is used by ophthalmologists in making their cases for additional consultants or for the application of new therapies.
Findings have been fed into the TILDA research
Finding are being used by NCBI to plan its new forms of service delivery.
20
Changes Afoot?NCBI service user base has increased
dramatically 6,000 (2004) to 16200 (2011).
No increase in staff
Decrease in income from HSE• approx 14% recent years.
Increase in numbers & income decrease is managed by changing current systems and methods of service delivery.
Shift to centre based service provision
Development of Regional Centres
21
Future Research
NCBI will shortly commence a study that will explore the cost of blindness as opposed to low vision
“Cost of sight loss” Report indicates that the cost of sight loss across the three categories is an average of a little over €9,000 per annum. Studies else where (particular in Finland) put the cost of blindness (total sight loss) at closer to €22,000 per annum.
22
Benefits of Such Research
Ensures service user & provider & funder needs are satisfied.
Can better understand context in which the organisation operating.
Provides information about service users’ current and future needs
Can be used to inform policy.
Enables actions to be based on true (evidenced) needs, not assumptions or outdated views.
23
Benefits of ResearchMinimise risk/ facilitates risk management
Facilitate less risk in the transfer of ideas to execution ensuring better long-term success and less wasted capacity and resources.
Can provide information about the required resources and how to use them to best capacity.
Allow organisation to assess the results of its activities.
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