Don’t blame the patient!
RNIB campaign report 27
A call for joint action to eliminate unnecessary sight loss from glaucoma
“Every year thousands of people in the UK needlessly lose their sight through glaucoma. It is time to develop a comprehensive strategy to improve glaucoma detection and overcome the barriers to effective treatment.”
Acknowledgements
We would like to thank all those who have contributed to this report. Special thanks go to Stephen Vernon (Royal College of Ophthalmologists), Prof. Heather Waterman (University of Manchester), Paul McDonald and Sonal Rughani (RNIB) for their valuable input.
Barbara McLaughlan and Steve Winyard
RNIB
Contents
Executive summary
1. Introduction
2. About glaucoma
2.1 What is glaucoma?
2.2 Risk factors
2.3 Early detection
2.4 Treatment options
2.5 How many people in the UK have glaucoma?
2.6 Support for people who have lost their sight due to glaucoma
3. The importance of compliance
3.1 Barriers to compliance
4. Conclusions and calls for action
References
Executive summary
Glaucoma continues to be a major cause of sight loss in the UK. Over 10 per cent of people who are registered blind or partially sighted have this condition.
Yet treatments are readily available and there is no reason why an estimated 210,000 people in the UK should have irreversible sight loss due to glaucoma.
Over the years considerable research has gone into building an evidence base to explain this unnecessary sight loss. We are now in a position where we have a clear understanding of the main reasons:
- Failure to detect glaucoma early, especially in African/African Caribbean communities who are at a much higher risk of developing glaucoma.
- Discontinuation of treatment.
- Problems with following the prescribed treatment regime.
When confronted with these reasons it is very tempting to simply blame the patient. The argument may go that it is their responsibility to have a regular eye test and once diagnosed, it is up to them to “do as they are told” and take their drops as prescribed.
However, sight loss from glaucoma is a much more complex issue and there is increasing recognition that those involved in glaucoma care need to work in an equal partnership with patients to improve adherence to treatment regimes. Initiatives to tackle the barriers to compliance range from the distribution of devices to help patients administer their drops to education programmes and electronic reminders to take drops at the appropriate times.
What seems to be missing is a strategic approach that looks at the whole picture from early detection to successful treatment and the preservation of sight. It is time to pull together the efforts made across the country and develop models of glaucoma care that have compliance at their heart. The forthcoming evaluation and follow-up of the glaucoma pilot pathways that have been sponsored by the Department of Health provide a good starting point for this work. Our ambition is to take them further with the following calls for action:
Call for action 1
We call on stakeholders in glaucoma care to put compliance at the heart of the implementation of new pathways and shared care schemes.
Call for action 2
We call on the Government to fund a pilot project to identify a successful strategy for addressing all barriers to compliance.
Call for action 3
We call on stakeholders in glaucoma care to form a UK wide alliance to address not only compliance but also early detection and other problem areas.
We believe strongly that it is time for eye care professionals, voluntary organisations, pharmaceutical companies and patients to join forces to tackle unnecessary sight loss from glaucoma. Reducing the number of people who lose their sight from glaucoma would make a substantial contribution to the Vision 2020 objective of eliminating avoidable blindness in the UK by 2020.
1.Introduction
In the summer of 2005 RNIB embarked on a tour of UK shopping centres to raise awareness of the importance of the early detection of glaucoma in avoiding unnecessary sight loss.
The shopping centre visits were combined with a series of professional meetings to discuss ways forward in glaucoma care. Since then we have followed developments with the pilots for new glaucoma pathways in Exeter, Walthamstow, Birmingham and Brighton and have organised the “Delivering the Vision” conference in York on 17/18 January 2007 that will report on the outcome of these pilots.
The ongoing discussions about new pathways clearly show that improvements in glaucoma care remain an issue. An important aspect of this is the extent to which changes to the current pathways not only improve care for people with glaucoma but also increase the likelihood of glaucoma being detected early. Early detection is the key to preventing unnecessary sight loss, a vital part of RNIB’s mission.
In this report we briefly discuss the issue of early detection. However, our main focus is on compliance. The fact that patients lose their sight because they have problems adhering to their treatment regime is very worrying indeed. It has been flagged up many times over the years, yet very little progress has been made in tackling this problem.
Our report summarises the current state of knowledge on compliance (see note at bottom of page) in glaucoma and provides a set of recommendations for decisive action in this area.
Note: In this report we have decided to use the term compliance throughout rather than making a distinction between compliance, concordance and adherence. For a discussion of these concepts please see: Waterman, H., Gray, T.: compliance, adherence and concordance in glaucoma: semantics or serious debates? Article under peer review. To be published in 2007.
2. About glaucoma
2.1. What is glaucoma?
Glaucoma is the name for a group of eye conditions in which the optic nerve is damaged at the point where it leaves the eye. This nerve carries information from the retina (the light sensitive layer in the eye) to the brain where it is perceived as a picture. The damage to the optic nerve in glaucoma is usually caused by increased pressure within the eye. This squeezes the optic nerve and damages some of the nerve fibres which leads to sight loss. Peripheral vision is the first area to be affected. But if glaucoma is left untreated, the damage can progress to eventual loss of central vision. [1, 2]
In some cases of glaucoma, eye pressure may be within normal limits but damage occurs because there is a weakness in the optic nerve. This is known as normal or low tension glaucoma.
High pressure within the eye does not always result in glaucoma. A common condition is ocular hypertension, where eye pressure is above normal level but there is no detectable damage to the field of vision. This condition may simply be monitored or may be treated depending upon the consultant’s view of the risk of developing glaucoma.
There are two main types of glaucoma – chronic and acute. The most common is chronic, more formally known as primary open angle glaucoma. Here the channels that drain fluid from the eye become blocked over many years. The pressure in the eye rises very slowly and there is no pain to indicate that there is a problem. However, the optic nerve is being damaged and the field of vision gradually becomes impaired. Usually the damage does not occur in the same part of the field of vision in both eyes. One eye compensates for the other and a great deal of damage will have been done before the person realises there is a problem with their sight.
The second type of glaucoma, acute, is much less common. More formally known as primary angle closure glaucoma, this develops when there is a sudden and more complete blockage of aqueous fluid within the eye ad the pressure rises sharply. This tends to be very painful because the rise in pressure happens suddenly. It must be treated and in most cases a person’s vision recovers completely. However, if treatment is delayed, there will usually be permanent damage to the eye.
2.2. Risk factors
There are several factors that increase the risk of glaucoma and these tend to be cumulative in effect.
- Age – Chronic glaucoma becomes much more common with increasing age. Rare below the age of 40, prevalence rises from between 1 and 2 per cent in the over 40s to 5 per cent in the over 75s.
- Race – People of African origin are four times more at risk of developing chronic glaucoma compared to those of European origin. The condition also tends to develop at an earlier age and be more severe. People of Asian origin are at an increased risk of developing acute glaucoma.
- Family history – There is a greatly increased risk of developing glaucoma if someone has a close relative (father, mother, brother or sister) with the condition. A recent study has estimated the lifetime risk of glaucoma at 20 per cent if one has a sibling with open angle glaucoma. [3]
Free annual NHS eye examinations are available for such people from the age of 40. - Short sight – People with very short sight (severe myopia) are at an increased risk of developing chronic glaucoma. They too are entitled to a free annual NHS eye examination.
- Diabetes is believed to increase the risk of developing glaucoma. The abnormal blood vessels in proliferative diabetic retinopathy increase the likelihood of a type of glaucoma that is very difficult to treat.
2.3. Early detection
A regular eye test is vital if glaucoma is to be detected early and sight loss prevented. Adults should have an eye test every two years. People over the age of 60 should have an annual eye test as should those over the age of 40 who have additional risk factors over and above their age, e.g. a family history or severe myopia. It is important that the test includes all three of the glaucoma tests:
- Ophthalmoscopy – an examination of the back of the eye including the optic nerve by shining a light from a special torch into the eye or by the use of a special examination lens and a slit lens (microscope for examining the eye).
- Tonometry – measurement of the pressure in the eye using a special instrument.
- Perimetry – a check of the visual field using a sequence of spots of light on a screen.
Early detection is a particular problem in African/African Caribbean communities where fewer people have regular eye tests than in white communities. This applies particularly to older people who are at an even higher risk of developing the condition. Only 38 per cent of African/African Caribbeans over the age of 60 have a regular eye test against 68 per cent of the general population. [4]
Another reason for late presentation in these communities appears to be economic deprivation. Evidence suggests that people from underprivileged areas who have a lower occupational status and a lower level of education are more likely to present late for detection and treatment, significantly increasing their risk of permanent sight loss from this condition. [5] Glaucoma is therefore one of the conditions that reflects health inequalities between different socioeconomic groups.
2.4.Treatment options
The main treatment for chronic glaucoma aims to reduce the pressure in the eye and so prevent further damage to the optic nerve. Usually the treatment is by means of eye drops. These reduce the amount of fluid being produced by the eye, increase the rate of drainage of fluid from the eye, or both.
There have been major advances in this form of treatment in recent years. The newer drops are far more effective and have fewer side effects than those previously available. However, if the eye drops do not lower the pressure sufficiently, laser or surgical treatments may be necessary.
Acute glaucoma is initially treated with drops and an injection of a medicine into an arm vein to lower the eye pressure. Once the pressure is down, a laser or surgical procedure is carried out to bypass the blockage in the eye’s drainage system and prevent a recurrence of the problem. These treatments are not painful and are usually done on a day patient basis.
2.5.How many people in the UK have glaucoma?
Glaucoma accounts for approximately 11 per cent of people registered as blind and 10 per cent of people registered as partially sighted. These figures are based on an analysis of registrations for blindness and partial sight in the year 1999–2000. Extrapolated to the current registration figures (March 2006) this means that due to glaucoma approximately 17,000 people are registered as blind and 15,500 are registered as partially sighted. [6]
It is however likely that there are significantly more people eligible for registration due to glaucoma than suggested by the figures recorded for 2006. Whilst these show a significant drop in registrations since the last analysis in 2003 (13 per cent for partial sight and 17 per cent for blindness) we believe the results to be a reflection of problems with the new registration system rather than a genuine reduction in the number of people experiencing sight loss.
In addition, the registration figures do not show the whole picture. They do not include the large number of people who have lost a significant amount of vision due to glaucoma but who do not wish to be registered or have not been offered registration. For example, there are people who have never entered the system and are not receiving any form of treatment.
Across the UK there are around two million people with a sight problem (with Snellen visual acuity less than 6/12). Based on the assumption that glaucoma accounts for a similar proportion of this total, as it does for total registrations, we estimate that approximately 210,000 people in the UK live with a serious sight problem due to glaucoma. This total includes the 32,500 people registered as blind or partially sighted.
The main reasons why glaucoma remains a major cause of sight loss in the UK despite the availability of effective treatments are:
- Failure to have a regular eye test.
- Failure to attend follow-up appointments.
- Poor compliance with treatment.
In this report we will focus on the issue of compliance but before doing so we would like to describe briefly what people with sight loss due to glaucoma can do to improve their chances of minimising the impact that losing their sight will have on their life.
2.6.Support for people who have lost their sight due to glaucoma
90 per cent of people say that sight is the sense they most fear losing so it is not surprising that a diagnosis of irreversible sight loss can have a devastating impact on an individual. At this stage people are told all too often by their ophthalmologist that there is nothing more that can be done. All too often they are not made aware of the support that is available to help them cope with their sight loss.
Patients need to be signposted to low vision support services at diagnosis or as soon as they are ready to accept that they may need help. The level of help provided depends very much on each individual’s specific needs and the extent of their sight loss.
Holistic low vision services can provide low vision devices to allow patients to make the most of their remaining vision, they can offer mobility training, can make adjustments in the home and help with daily living skills. Most importantly they can provide invaluable emotional support through peer groups or individual counselling.
A recent survey of low vision services in the UK has shown that there are areas of the country where services are very good, in others very little is available to support independent living. [7]
Whatever the situation in the patient’s own area, it is important to empower patients to seek support at a time of their own choosing. The treating clinicians and their team should play a greater role in making sure that the transition from medical treatment to care and support is as smooth as possible.
For more information on available services please visit RNIB’s website or the website of the National Association of Local Societies for Visually Impaired People (NALSVI) at:
3.The importance of compliance
As we have seen, glaucoma is largely treatable. The earlier it is detected, the better the prognosis. However, despite this positive outlook sight loss from glaucoma continues. This is partly due to late diagnosis when people only go to see their optometrist once they experience symptoms of sight loss, but the issue of compliance seems to be just as important.
People who have been diagnosed with increased intraocular pressure have to take eye drops for the rest of their lives to reduce pressure as well as avoiding fluctuations throughout the day. [8]
The problem is that many patients do not always take their medication correctly (compliance) or they may even discontinue treatment altogether.
A survey by the International Glaucoma Association in 2003 suggested that 20–30 per cent of patients do not follow their treatment regime. Experts estimate that the true level of non-compliance may be as high as 40–50 per cent. [9, 10]
It is likely that the higher figure of 40–50 per cent is correct because we know that as many as 32 per cent of patients do not pick up their repeat prescriptions and this figure does not include those who use their medication incorrectly.