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Glaucoma: Improving Outcomes Through Dedicated Support

2 CPD in Australia | Not available in NZ from Nov | 1 October 2018



By Dr. Ben Ashby and Annie Gibbins

Glaucoma is one of the world’s leading causes of irreversible blindness yet half of those with glaucoma remain undiagnosed. Glaucoma Australia is committed to eliminating glaucoma blindness and supporting those at risk of, and living with, the disease. By drawing on evidence-based research, this not for profit organisation has developed a range of services and resources that are proving to offer valuable support to patients.

LEARNING OBJECTIVES

  1. Know how to register patients with Glaucoma Australia
  2. Recognise the importance that education plays in helping patients control their glaucoma
  3. Understand the benefits of patient support by Glaucoma Australia
  4. Be aware of how to access the resources of Glaucoma Australia that support care of the glaucoma patient

Glaucoma is one of the leading causes of irreversible blindness in the world, estimated to affect 66 million people globally including 300,000 Australians. Sadly, 50 per cent of people with glaucoma remain undiagnosed, and as a consequence these 150,000 people are progressively losing their vision, unaware that the loss is preventable but irreversible.1

While sight saving interventions are readily available, they are only effective with early detection, consistent follow-up and treatment adherence. These in turn require timely education and support to help achieve the goal of well-being and a positive quality of life outcome for each patient.

Considering that the majority of glaucoma patients have asymptomatic vision loss, which progresses over an extended period of time, an immediate challenge is creating an eye health awareness culture that drives people over the age of 50 to get tested for glaucoma every two years by an optometrist. Furthermore, we know glaucoma to be strongly genetic, with first degree relatives having up to a 23 per cent risk of developing glaucoma and up to a 56 per cent risk if their direct relative has advanced glaucoma. Based on these statistics, 34,500 – 84,000 of the currently undiagnosed 150,000 Australians have a relative with glaucoma.2 Work needs to be done to get this genetically predisposed group tested from the earlier age of 40. As family history is both a strong indicator of risk, and one that can be identified without the need for medical testing, this is an area of great opportunity to improve detection rates.

Compliance with medical management of glaucoma is the other concerning aspect of avoidable blindness. It is reported that after a year, 30 per cent of patients will stop taking their drops. For those who continue therapy, studies indicate that on average, 50 per cent of patients are not compliant with their dosing on 75 per cent of days.3 With a growing proportion of optometrists now therapeutically endorsed, it is an increasing challenge that optometry needs to address. Fortunately, optometrists are not alone in the fight against glaucoma blindness.

Glaucoma Australia Mission

Glaucoma Australia’s mission is to eliminate glaucoma blindness. A major strategic focus are the 150,000 people who are completely unaware they have glaucoma and are therefore at risk of suffering preventable but irreversible blindness. In particular, Glaucoma Australia is committed to reaching the relatives of people with glaucoma and motivating them to have early and regular testing.

First degree relatives of people diagnosed with glaucoma are the key if Glaucoma Australia is to achieve its mission. The Targeting At Risk Relatives of Glaucoma Patients for Early Diagnosis and Treatment (TARRGET) pilot study recently revealed that 93 per cent of participants were aware of their family history of glaucoma. However 17 per cent stated they had not been screened for glaucoma before. An additional 14 per cent had had an eye health check but were unsure if they had been screened for glaucoma. The study also revealed that one third of those first degree relatives did not understand how their family history of glaucoma related to their own personal risk of developing the disease.2

Glaucoma Australia now has a new patient support journey that guides, educates and supports people through four critical stages of glaucoma. This has been designed to increase early detection, promote appointment attendance, treatment adherence and improve quality of life outcomes.

The four stages are:

  1. Initial diagnosis
  2. Starting treatment
  3. Treatment adherence, and
  4. Living with glaucoma.

What Does Glaucoma Australia Offer The Patient?

Glaucoma Australia’s patient support journey offers a patient-centred education and support system framed around eliminating glaucoma blindness. The earlier the patient is referred to Glaucoma Australia, the more opportunity for sight saving conversations with orthoptist educators on staff. Patients are often anxious about their diagnosis, symptoms, testing, treatment and potential consequences of diet, exercise and lifestyle choices and the educators are experts at answering frequently asked questions in a calm and detailed manner. All phone calls are logged to enhance information profiling and support documents and web links are emailed to provide ongoing assistance.

Stage 1: Initial Diagnosis

The orthoptist educator welcomes the patient to Glaucoma Australia and identifies where the patient is on their glaucoma journey, from suspect through to under treatment. For those being referred from optometry to ophthalmology for the first time, the support focuses on preparing the patient for their initial ophthalmological appointment. The patient is informed of the family link and encouraged to get their direct family tested by an optometrist.

Stage 2: Starting Treatment

The orthoptist educator follows up the outcome of the initial ophthalmology appointment and educates according to the diagnosis and prescribed treatment regime. The importance of ongoing appointment adherence is highlighted for ongoing suspects and those recently diagnosed, along with a reminder to get their direct family tested by an optometrist.

Stage 3: Treatment Adherence and Family

The orthoptist educator reinforces the importance of treatment adherence and the reasons for ongoing testing, for example the automated field test and Optical Coherence Tomography (OCT) scans. Significant time is spent answering questions around topics such as eye drop application, side effects, storage, alternative treatment options such as laser/surgery, lifestyle and driving. The family link is discussed and further support is provided to those who have not yet encouraged their direct family members to get screened by an optometrist.

Stage 4: Living with Glaucoma

Stage 4 is for people who are established in their glaucoma management by their optometrist and ophthalmologist. It is initiated 12 months post diagnosis and supports best practice collaborative care principles. This stage is fully automated with direct communications, aligned to frequently asked questions and profiling, sent to the patients via email on a monthly basis. The Glaucoma Australia orthoptist educator also provides phone support for those without email or access to the internet. Reminders on the family link are ongoing.

Collaboration: Key To Success

Glaucoma Australia works with optometrists to ensure that people at risk of glaucoma are supported from the earliest sight saving opportunity. The first step in activating Glaucoma Australia’s support is to put them in contact with patients. Optometrists can either prompt Glaucoma Australia to contact their patient directly or provide the patient with resources to contact Glaucoma Australia. The easiest way to connect a patient with Glaucoma Australia is via Oculo at the time of referral. Other ways to connect to Glaucoma Australia include using the ‘Join our Community’ weblink www.glaucoma.org.au/registration, brochures or contact cards. The education and support is then provided free of charge thanks to ongoing sponsorship and donations from those who want to make a difference.

Resources For Awareness

Glaucoma Australia is also using internet-based technologies to identify people with glaucoma, support them and improve treatment adherence. One example is a glaucoma risk calculator which can be used and shared to promote the family link to glaucoma. This includes a call to action for relatives to seek the care of an optometrist to provide a comprehensive assessment for glaucoma.

Once patients with glaucoma, or at risk of glaucoma, are connected to Glaucoma Australia they will also have access to:

  • Monthly eNewsletters promoting key glaucoma awareness messages and glaucoma news
  • Facebook groups facilitated by the orthoptist educators. These are state-based to facilitate development of local networks of peer-support groups. There is also a dedicated congenital glaucoma group for families
  • Email communications aligned to the particular stage a patient is at within their support journey, with links to relevant website resources and YouTube videos, and
  • 10 patient and six educator videos based on frequently asked questions.

Promoting Glaucoma Testing With Optometrists

Glaucoma Australia has a strong focus to drive awareness through relatives who have been diagnosed with glaucoma. This is a particularly important area of activity as it provides a direct link to an at-risk population.

Patient support data collected by Glaucoma Australia shows that only one in four people with glaucoma are aware of the family link. There could be many reasons for this, including that it was lost amongst the other information conveyed during the consultation, or that it was not the right time in the patient’s glaucoma journey to bring this up.

Advice from a family member to have an eye examination with an optometrist presents a powerful opportunity to detect glaucoma early, yet unless there is awareness of the family link, it is unlikely that this advice will be given. As such, patient education about the family link remains a continuous area of focus for Glaucoma Australia in their work to eliminate glaucoma blindness. Patient education also provides important ongoing support to people with glaucoma in between visits with their eye health professionals.

Improving Referral Attendance

When Glaucoma Australia initiates contact with patients at the time of referral, they find that one in 20 patients referred by an optometrist to an ophthalmologist do not intend to make the appointment to see the specialist. This of course comes with the territory of a condition with no symptoms and an incredibly slow onset. The possibility of 5 per cent of glaucoma patients not getting the appropriate early treatment to preserve their vision is an area Glaucoma Australia is seeking to transform. For these patients, the additional support and resources of Glaucoma Australia becomes invaluable to ensure they make it to their next consultation to continue their care.

Improving Medication Compliance

The three most commonly reported reasons for glaucoma patients not adhering to eye drop treatment are side effects, not understanding the condition, and difficulty instilling the medication.4 These are not insurmountable challenges as each has a range of potential solutions. However, as these problems are not always communicated to the eye care practitioner, there may not be the opportunity to provide the appropriate advice before vision is unnecessarily lost. Glaucoma Australia provides online resources and videos that provide clear explanations of the various forms of glaucoma to improve understanding of the condition and its treatment. These are also made available in multiple languages, a helpful resource for a hard to explain condition which has different levels of risk depending on demographics and ethnicity. Furthermore, Glaucoma Australia’s educators have a great deal of experience in talking patient’s through these concepts and directing them to the most appropriate material for future reference. The Glaucoma Australia team will direct patients back to their primary eye care practitioner when it is clear that further care or medical advice is required. Thus, Glaucoma Australia provides an excellent additional support mechanism for optometrists to provide the best possible care for their patients.

Improving Patient Understanding Of Tests

Glaucoma Australia often receives queries about what optometrists do and the medical devices they use. These questions include what the instruments measure, how often they need to be repeated and how the results relate to glaucoma. A useful tool linked to the Glaucoma Australia website shows how progression on the visual field and OCT impacts the field of view for a number of real life images. These images include driving, stairs, reading and the kitchen. This can be a meaningful way to engage the patient with their condition to support compliance and persistence with the right treatment.

Above and below: The Glaucoma in Perspective website shows how glaucoma affects vision over time. The videos demonstrate that a significant amount of visual field may be lost, before visual symptoms become noticeable.www.glaucomainperspective.com.au

Development of the Support Model

The Glaucoma Australia patient support model is a world-first initiative developed following extensive consultation and feedback with key allied stakeholders from optometry, ophthalmology and pharmacy. The innovative patient support journey has been mapped out to identify how, what, when and why personalised education and support can be targeted at critical, high risk periods throughout the patient journey.

The patient support journey is not static. It continues to grow and be refined and will have the capacity to drive exciting new research from data not previously captured from an Australia-wide perspective.

When an optometrist connects a patient to Glaucoma Australia the key areas of support provided are:

  1. Appointment adherence
  2. Treatment adherence
  3. Understanding of glaucoma, and
  4. Communication with family members.

The Glaucoma Australia website also hosts a resource centre for optometrists. Here you will find a range of educational resources to assist patients that will help them to better understand glaucoma, the treatment options available, and the importance of treatment adherence and ongoing monitoring. Glaucoma Australia also provides regular news articles and research updates for practitioners.

Optometrists are welcome to download these patient resources or order copies free of charge, which can be delivered anywhere in Australia.

Examples include:

  • What is glaucoma?
  • Glaucoma simply explained (available in 13 languages)
  • Types of glaucoma and related conditions fact sheets
  • Glaucoma treatments fact sheets
  • What you should know about eye drops
  • Instilling eye drops for glaucoma
  • Glaucoma advances part 1 - glaucoma a general overview
  • Glaucoma advances part 2 - optic nerve changes including OCT
  • Glaucoma advances part 3 - visual field changes perimetry
  • Glaucoma advances part 4 - glaucoma risk factors and drug treatments
  • Glaucoma advances part 5 - glaucoma surgical treatments, and
  • Glaucoma advances part 6 - glaucoma current Australian research.

What To Do For Your Patients

Although you can refer a patient to Glaucoma Australia at any time, the best time is during or directly following your patient’s initial diagnosis. This early referral will result in your patient receiving comprehensive education and support via phone and digital communications, in the early stages of their diagnosis, when they need it most.

Practitioners using Oculo can refer to Glaucoma Australia when referring to the ophthalmologist or another optometrist. Once Glaucoma Australia receives an Oculo notification, an orthoptist educator offers phone or electronic education and support tailored to the individual patient diagnosis and stage in their glaucoma support journey.

Alternatively, the practitioner or practice manager can take 30 seconds to register their patient via the ‘Join our Community’ page which can be found at www.glaucoma.org.au/registration. Both methods instantly trigger the patient support journey, initiating a welcome email and then personalised communications on an ongoing basis. The journey provides the opportunity for all questions to be answered with support resources as backup. For example, questions about eye drop application, technique or storage will be answered in detail with support brochures, articles and/or YouTube videos reinforcing key messages. Anxious patients who require more time with the educator can call the free helpline to speak with an educator during business hours.

Older methods such as handing out referral brochures and contact cards can still be used and will activate the patient support journey once received at the Glaucoma Australia office.

Register The Patient With Glaucoma Australia or Leave It To Them?

Proactively registering the patient via Oculo, or helping them register on the ‘Join our Community’ webpage, is the most effective way to achieve consistent follow-up. In light of the risk to vision from non-attendance to appointments and the busy lives people lead, asking Glaucoma Australia to initiate contact would likely have the best chance of connecting a patient with support. Glaucoma Australia’s data shows that males in particular are far less likely to make the initial contact, which is reflected in a range of other men’s health issues. As with all referrals, the optometrist must have the patient’s permission to provide their contact details to Glaucoma Australia. Once this information is received, Glaucoma Australia will communicate with them using their preferred method.

Questions Patients Ask Glaucoma Australia

Glaucoma Australia’s latest data indicates patients need significant education and support around their personal treatment regimes, specifically eye drop application, surgical options, and living with glaucoma. With new research continuously coming to light, Glaucoma Australia unceasingly updates these materials and participates in team training, in consultation with its expert advisory medical panel and Professional Committees.

The most common topics that people have phoned Glaucoma Australia to enquire about over the last six months are:

  • What is glaucoma?
  • Eye drop application and side effects
  • Lifestyle changes such as exercise
  • Visual field tests
  • Unstable Intraocular Pressure
  • Laser treatments
  • MIGS
  • Referral request
  • Support groups
  • Trabeculectomy, and
  • Vitamin B3.

Glaucoma Australia’s team is frequently responding to enquiries in these areas, and many patients access this information independently via the website. These materials are all compiled by Glaucoma Australia’s optometry, ophthalmology and pharmacy committees, all of whom volunteer their support to help people with glaucoma via Glaucoma Australia.

Does Contact With Glaucoma Australia Make A Difference?

Glaucoma Australia has been supporting patients with glaucoma since 1999 by providing them with ever improving quality resources and information about their condition and its treatment. The impact of this work was recently validated in a study of just over 100 patients that evaluated the impact of glaucoma education on patient knowledge, anxiety and treatment satisfaction.5 This study demonstrated that those supported by Glaucoma Australia better understand their condition and experience less anxiety about their treatment. These improved outcomes signal a future of glaucoma management where engagement with a patient support group becomes the standard. This is a marked departure from the past where patients were linked to support groups after the development of a problem or anxiety. This study also supports other findings in glaucoma research that a better outcome can be achieved with a more informed patient.6

Strength In Collaborative Care

Glaucoma is a complex, chronic condition requiring lifelong care and monitoring. It is fortunate for those with glaucoma that the condition does have highly effective treatments. However, the challenge remains in that the treatments often have side effects.

These side effects are on the mild end of the spectrum when compared to the potential to lose sight. However, this possibility can be displaced in the mind of the patient when the condition itself is symptomless and progresses incredibly slowly and accounts for high rates of treatment non-compliance. These obstacles to good visual outcomes are being tackled by the increasing importance placed on patient education as a critical component of quality patient management.7

This is where Glaucoma Australia can help you. Glaucoma Australia is a not-for-profit organisation working to eliminate glaucoma blindness. By including this organisation in the management of glaucoma patients, your patients will be empowered with information that encourages them to control their condition. Glaucoma Australia will also support attendance at appointments and compliance with management plans as well as communicating awareness to family members of their need to be checked for glaucoma every two years or as recommended. Glaucoma Australia is an invaluable ally for all optometrists in the fight to preserve the vision of your glaucoma patients. Remember to include Glaucoma Australia and its resources in the care of every patient with glaucoma.

   

Dr. Ben Ashby B.Optom (hons) PhD GradCertOcTher has practiced optometry and held leadership roles in franchise optometry, private practice, corporate optometry, eye research and education.

Dr. Ashby is Head of Optometry for Specsavers with responsibility for professional standards, clinical governance and optometry education programs. He is actively involved in the research, development and implementation of sustainable models of eye care delivery that improve patient outcomes and reduce avoidable blindness. Dr. Ashby sits on the Glaucoma Australia council as Optometry Chair, the Optometry Australia glaucoma clinical guidelines working group, Deakin University Optometry Advisory Board, is an Adjunct Lecturer at UNSW and an Honorary Teaching Fellow at the University of Auckland

 

   

Annie Gibbins BHlthSc Grad Dip Ed, Med, AICD is the Chief Executive Officer of Glaucoma Australia with extensive senior management experience in health, education and business. She has a strong skillset in collaborative change management focussed on patient centred outcomes and data driven evidence. Ms. Gibbins is a powerful force for change in the war against the blinding impact of glaucoma and passionate about

 

References
1. Prevalence of Open-angle Glaucoma in Australia: The Blue Mountains Eye Study, Paul Mitchell, Wayne Smith, Karin Attebo, Paul Healey
2. TARRGET study - Targeting at risk relatives of glaucoma patients for early diagnosis and treatment.
3. Okeke CO, Quigley HA, Jampel HD, Ying GS, Plyler RJ, Jiang Y, et al. Adherence with Topical Glaucoma Medication Monitored Electronically: The Travatan Dosing Aid Study. Ophthalmology. 2009.
4. Rodriques ML, S.L., Rocha EM., Patients’ reasons for self-reported non-adherence to glaucoma treatment. American Academy of Ophthalmology 2009.
5. Skalicky, S., D'Mellow, G., House, P., Fenwick, E.; The Glaucoma Australia educational impact study: a randomized short-term clinical trial evaluating the association between glaucoma education and patient knowledge, anxiety and treatment satisfaction, Clin. Exp. Ophthalmol. 2017.
6. Friedman DS, Hahn SR, Gelb L, et al. Doctor-patient communication, health-related beliefs, and adherence in glaucoma results from the Glaucoma Adherence and Persistency Study. Ophthalmology. 2008
7. Cate H, Bhattacharya D, Clark A, Fordham R, Notley C and Broadway DC. Protocol for a randomised controlled trial to estimate the effects and costs of a patient centred educational intervention in glaucoma management. BMC ophthalmology. 2012H

' Glaucoma Australia is committed to reaching the relatives of people with glaucoma and motivating them to have early and regular testing '