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 WinyardRNIB

Contents

Executive summary1. Introduction2. About glaucoma

2.1 What is glaucoma?2.2 Risk factors2.3 Early detection2.4 Treatment options2.5 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 compliance3.1 Barriers to compliance

4. Conclusions and calls for actionReferences

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 factorsThere 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 detectionA 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 optionsThe 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 www.rnib.org.uk or the website of the National Association of Local Societies for Visually Impaired People (NALSVI) at: www.nalsvi.cswebsites.org

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.

Despite major efforts by pharmaceutical companies who have set up patient education programmes to improve compliance, large numbers of patients continue to increase their risk of sight loss. There are many reasons for this, which are discussed in more detail further on. What is important is to recognise that non-compliance is a very complex issue that should never be reduced to blaming the patient for not following his or her treatment regime.

3.1. Barriers to complianceWhat are the main barriers to compliance? Five main reasons have been identified [11, 12, 13, 14]:

a. The characteristics of the diseaseb. Treatment regimec. Forgetfulnessd. Incorrect administration of eye dropse. Relationship between the treating clinician and the patient.

a. The characteristics of the diseaseGlaucoma is a chronic condition that is not painful and has no symptoms in its early stages. Yet successful management requires the regular administration of eye drops. However, patients who do not take their medication will not see an immediate negative effect and may not believe that the drops have any beneficial effects. They may not even believe that they may go blind if they do not take their eye drops. This may result in discontinuation or interruption of treatment.

b. Treatment regimeGlaucoma patients may need to take eye drops up to four times a day, sometimes more. Not surprisingly, compliance is lower with increased frequency of administration. It is hoped that the increasing prescription of eye drops that only need to be taken once or twice a day will improve compliance. [15]

Surprisingly, glaucoma patients who are in hospital for other conditions do not necessarily improve adherence to their treatment regime. In fact, the opposite is often the case with patients not having access to their eye drops or not receiving help in taking them at the appropriate intervals.

c. ForgetfulnessEspecially where patients have to take eye drops frequently the risk of missing out a dose or taking it at the wrong time increases. This applies to all glaucoma patients. However, those who are elderly and may have a deteriorating short-term memory are even more likely to forget their medication or take it at the wrong intervals.

d. Incorrect administration of eye dropsEven if patients remember to take their medication it can be difficult for them to do so correctly. Older patients in particular may have problems opening or squeezing the bottle or they may be unable to

put the drops in the eye correctly thereby minimising the treatment effect. An assessment of glaucoma patients conducted by Doncaster Royal Infirmary in 2006 found that 30 per cent of patients demonstrated ineffective drop administration techniques.

Furthermore, incorrect technique was considered a contributory factor in two thirds of cases of poorly controlled glaucoma. Yet, 88 per cent of patients reported that they had never received instruction on the correct use of their eye drops [16] and many patients leave consultations without being told that most manufacturers of glaucoma medication provide free devices to help with the administration of their particular eye drops.

It is also important to raise awareness of the fact that patients can request the help of district nurses who can visit them in their homes to administer the eye drops if the patient lives alone.

e. Relationship between the treating clinician and the patient

The relationship between patients and their clinicians is an essential element in glaucoma compliance because of the nature of the condition. First of all, clinicians play an important role in educating their patients about the condition, the way it is treated and the consequences of non-compliance. A good patient – doctor relationship increases the likelihood that patients will tell their doctor truthfully whether or not they have adhered to their treatment regime. Failure to indicate non-compliance can easily lead to unnecessary changes to the treatment regime that may compromise its outcome.

Unfortunately, a recent study conducted by Eastbourne District General Hospital to assess patient understanding of glaucoma and their compliance with treatment revealed that only one patient in four had a reasonable understanding of their condition. Lack of understanding correlated with poor compliance whereas the provision of written information was associated with better knowledge and improved compliance.

Furthermore, patient understanding of their condition did not remain constant but dropped significantly after six months. [17] This suggests that ongoing efforts are required to improve adherence to treatment

regimes. An equal partnership approach between clinicians and patients should be the basis of these efforts. Such a partnership approach increases the likelihood that the best treatment option is chosen for each individual patient and that problems with following the treatment regime are identified and tackled early on. [18, 19]

4. Conclusions and call for action

In 1983 Zimmerman and Zalta presented what they called “a comprehensive strategy to facilitate the safe and effective use of glaucoma medications” combining “education about the disease and its treatment, ‘tailoring’ of the therapeutic regimens, training and reinforcement in eye drop application, cooperation with primary care physicians, alleviating side effects, and improving doctor-patient relationships.” [20] It appears that more than 20 years on we continue to face the same challenges.

People continue to lose their sight because they do not have regular eye tests that could detect early signs of the condition at a stage when treatment options exist. And even if they are diagnosed the barriers to following prescribed treatment regimes mean that patients continue to lose their sight despite treatment.

It appears that the reasons for non-compliance are well known. Different agencies (physicians, nurses, patient organisations, pharmaceutical companies) have been involved in various programmes to tackle the different barriers to compliance.

However, since the problem persists we feel that it is time to make a concerted effort to address this situation.

Call for action 1

We call on stakeholders in glaucoma care to put compliance at the heart of decisions about new pathways and shared care schemes.

A basic premise of these schemes is a greater involvement of community optometrists in providing glaucoma care. This may have a beneficial impact on detection as well as facilitating the monitoring of stable patients in a convenient location.

However, given the barriers to compliance discussed above optometrists involved in these schemes will need to allocate sufficient

time to encourage compliance. This means a continuing effort to educate patients about their condition. It also means building a relationship between optometrists, clinical teams and patients that is based on an equal partnership and ensures that compliance problems are identified early and addressed appropriately.

Such an approach requires the professionals involved in glaucoma care to spend more time with patients. To achieve this due consideration needs to be given to the adequate reimbursement of all aspects of glaucoma care under the current review of General Ophthalmic Services (GOS).

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.

A successful strategy to reduce the number of patients who fail to adhere to their glaucoma treatment regime is likely to require the involvement of all of stakeholders in glaucoma care (patients, consultants, optometrists, nurses, pharmacists, non-governmental organisations, pharmaceutical companies, etc.). Existing strategies should be reviewed to establish the most likely elements of a successful programme before piloting it in a number of areas.

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 that we need an active forum for stakeholders where best practice experiences can be exchanged and strategies can be devised to improve glaucoma care across the country. Most importantly we need a forum that can take action to raise the profile of glaucoma within the Department of Health and the NHS and ensures that glaucoma is properly recognised as a long-term condition. Possible activities could include public awareness

campaigns targeted at the general public or at high-risk groups as well as campaigning to influence decision-makers.

For further information on this initiative please contact: Barbara McLaughlan (bmclaughlan@rnib.org.uk, tel: 020 7391 2302).

References[1] International Glaucoma Association, Glaucoma: a greater understanding, 2004, London, IGA[2] RNIB and Royal College of Ophthalmologists, Understanding Glaucoma, 2004, London, RNIB[3] Sung,V., Koppens, J., Vernon, S., et al: Longitudinal glaucoma screening for siblings of patients with primary open angle glaucoma: the Nottingham Family Glaucoma Screening Study. Br J Ophthalmol. 2006 ;90:59-63[4] Winyard. S. Tunnel Vision. Improving the diagnosis and treatment of glaucoma in the UK. Campaign report 24. RNIB 2005[5] Fraser, S., Bunce, C, Wormald, R. Brunner, E. Deprivation and late presentation of glaucoma: case-control study. BMJ 2001;322;639-643.[6] The Information Centre. National Statistics. Registered blind and partially sighted people. Year ending 31 March 2006. Available at: http://www.ic.nhs.uk/pubs/blindeng06/report/file[7] McLaughlan, B. Lightstone, A. Winyard, S., A question of independence. AMD Alliance UK, 2006[8] The Advanced Glaucoma Intervention Study (AGIS): 7. The relationship between control of intraocular pressure and visual field deterioration. Am J Ophthalmol 2000; 130:429-40[9] Gurwitz, J., Glynn, R., Monane, M., Everitt, D., Gilden, D., Smith, N., Avorn, J.: Treatment for glaucoma: adherence by the elderly. American Journal of Public Health, 1993, 83:711-716.[10] Patel, S., Spaeth, G.: compliance in patients prescribed eye drops for glaucoma. Ophthalmic Surgery. 1995, 26(3): 233-236[11] International Glaucoma Association: UK News: Compliance – the clinical practice challenge (II). www.glaucoma-association.com[12] Eye to eye supplement: Compliance – the hidden challenge of glaucoma Managements. Eurotimes. April 2003. www.escrs.org/eurotimes/April203/Supplement/SupplementApril.asp[13] Tsai, JC: Medication adherence in glaucoma: approaches for optimizing patient compliance. Curr Opin Ophthalmol. 2006 Apr;17(2):190-5.[14] Taylor. S., Galbraith, S. Mills, R.: Causes of non-compliance with drug regimens in glaucoma patients: a qualitative study. Journal of Ocular Pharmacology and Therapeutics. Oct. 2002, Vol. 18, No. 5: 401 - 409

[15] Stewart, W., Konstas, A. Pfeiffer, N.: Patient and ophthalmologist attitudes concerning compliance and dosing in glaucoma treatment. Journal of Ocular Pharmacology and Therapeutics. Dec 2004, Vol. 20, No. 6: 461-469[16] International Glaucoma Association: UK News: Compliance – the clinical practice challenge (II). www.glaucoma-association.com[17] International Glaucoma Association: UK News: Compliance – the clinical practice challenge (I). www.glaucoma-association.com [18] Working Party of the Royal Pharmaceutical Society: From compliance to concordance: achieving shared goals in medicine taking. The Royal Pharmaceutical Society of Great Britain in partnership with Merck Sharp and Dohme: London, 1997: 1-52.[19] Waterman, H, Gray, T.: Compliance, adherence and concordance in glaucoma: semantics or serious debates? Article under peer review. To be published in 2007.[20] Zimmerman, T.J., Zalta, A.H.: Facilitating patient compliance in glaucoma therapy. Surv Opththalmol. 1983;28 Suppl: 252-8.

Other RNIB campaign reports

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26 Taken for a ride Tackling the unjust exclusion of blind people from the higher rate mobility component of Disability Living Allowance2006, ISBN 978 1 85878 726 8 £5.00

25 Open your eyes A call for action to address the UK’s impending eye health crisis2006, ISBN 978 1 85878 674 2 £5.00

24 Tunnel vision Improving the diagnosis and treatment of glaucoma in the UK2005, ISBN 978 1 85878 654 4 £5.00

23 The costs of sight loss in the UK 2004, ISBN 978 1 85878 631 5 £5.00

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