How researchers are looking to improve the day-to-day experience of people with glaucoma
Dr. Simon Skalicky
Clinical Senior Lecturer, Sydney University and Melbourne University, a Visiting Medical Officer at the Royal Victorian Eye and Ear Hospital, and in private practice.
Glaucoma impacts the quality of life (QoL) for over three hundred thousand Australians and their families. QoL is a reflection of an individual’s general wellbeing: one’s ability to pursue a fulfilled and happy life.1,2 Although the determinants of QoL are unique for each person and/or culture, good vision is a key influence of QoL for all. In glaucoma, reduced QoL begins in the earliest stages of disease, and deteriorates proportionally to increasing visual loss from optic nerve damage.3,4 The negative influence of glaucoma-induced visual loss increases when both eyes are involved.3-5
Glaucoma impacts activities related to daily function and independence, such as walking, adjusting to different illumination levels, driving, seeing at night, reading, judging distances, walking on stairs and seeing objects coming from the side.6-10 The influence on these activities is often minimal at first, but gradually increases as optic nerve damage worsens. More advanced glaucoma is associated with increased risk of motor vehicle accidents and injury from falls.11
Numerous other factors may impact visual function and QoL in glaucoma, including other ocular conditions, medical comorbidities, psychological and environmental influences. With poorer vision comes an increasing fear of blindness, social withdrawal and other limitations.12,13 Depression, associated with chronic disease and disability, is more common in patients with advanced glaucoma, and is associated with reduced QoL.14 Dry eye syndrome, commonly worsened by topical glaucoma medications (especially preserved medications), contributes to the overall burden of disease.15 Dry eye syndrome can be improved by eyelid hygiene, warmth and massage, topical lubricants (ideally preservative free) and sometimes altering the topical drop regimen. Cataract, frequently found among glaucoma patients,16-18 is an important determinant of their QoL that is readily treatable by surgery.19
Health-related questionnaires are typically used to quantify glaucoma patients’ QoL. Such questionnaires mostly involve several items that each address a unique visual function. Also called patient reported outcomes (PROs) they can reflect general health or broad visual function, or can target key attributes, such as visual dysfunction related to glaucoma, health-related anxiety or satisfaction with medical care. PROs are increasingly recognized as key measures of health outcomes, and are commonly used in randomised clinical trials. With the introduction of more psychometrically-robust data analysis techniques such as Rasch analysis, PROs have continued to improve and provide more useful metrics of a patient’s holistic health experience related to glaucoma.20
Patient education, counselling, treatment satisfaction, access to advocacy services and support networks can influence QoL related to glaucoma. Increasingly it is recognised that patients who acquire information regarding glaucoma from sources external to their physician have greater treatment satisfaction, improved adherence to and persistence with therapy.21 In an effort to improve overall patient understanding from early in the disease course, Glaucoma Australia (GA) has devised a comprehensive patient-focused educational intervention, designed to improve patient knowledge of their condition, autonomy, and adherence to treatment and monitoring regimens. This will hopefully empower patients to make appropriate decisions regarding their health management and translate into improved patient QoL outcomes. However, the impact of GA’s interventions upon patients newly diagnosed with glaucoma has not yet formally been evaluated.
For this reason the Glaucoma Australia Educational Impact Study is being undertaken. This is a randomised clinical trial investigating the health-related impact of mail-out and telephone-based educational interviews to newly diagnosed glaucoma patients, in terms of glaucoma-related comprehension, levels of anxiety, treatment satisfaction and medication regimen adherence. The study will involve newly diagnosed patients with open angle glaucoma who are treated with topical IOP-lowering medications. It is important to perform such a study, as through this we can then identify strengths of Glaucoma Australia’s education service, current limitations and directions of potential growth.
Research into QoL for patients with glaucoma has made substantial progress over several decades, and has provided important insights into the fears and daily challenges of Australians with glaucoma. However, more remains to be learnt. Further work is required to understand better the network of factors that influence QoL in glaucoma. Additionally, we would benefit from continuing refine our methods of QoL assessment. Progress with new and better diagnostic and therapeutic techniques in glaucoma must be matched with carefully conducted studies evaluating the QoL implications of these technologies. Such assessments would be closely linked with health-economic analyses, which are increasingly important as health economic pressures increase. Importantly, we must continue to focus on our patients as individuals, address their real life concerns and understand the impact of glaucoma on their and their families’ lives.
The Glaucoma Australia Educational Impact Study is generously supported by a grant from the Eye Surgery Foundation, Perth WA
This article has been adapted and reprinted with kind permission from mivision ophthalmic journal. Originally published in mivision Mar’15, Issue 99.
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