Health-related quality of life is an assessment of how an individual’s wellbeing may be affected over time by a disease, disability or disorder.1 The impact of glaucoma on the individual sufferer, and the downstream effect on carers, has been well documented in the literature.2-16 There are simple measures that can be taken, as an eye care provider, to enhance a patients’ quality of life and ease the burden of treatment for both the patient and carers.
Glaucoma is a challenging disease for both patient and clinician. From the patient perspective it is often asymptomatic, and usually involves topical medication with potential side-effects and frequent follow up visits to the ophthalmologist with laborious testing. For older patients, these frequent visits often require younger generation carers to take time from work and their busy schedules to provide transport to and from appointments. There is also no promise of better vision– only the hope that the vision won’t worsen. The clinician is left with the unenviable task of recognising all of these potential difficulties and convincing the patient that they are still, in some way, helping them and providing an important service. The following three examples of patients diagnosed with glaucoma in my practice provide insight into how glaucoma can impact on quality of life and what eye care providers can do to assist.
1. IMPACT OF DELAYED GLAUCOMA DIAGNOSIS
I recently saw a healthy elderly patient who had been referred by his optometrist. The patient, who had worn glasses for most of his life, had been informed at a routine optometry eye check, that his acuity was now too poor for driving. The optometrist had noted significant cataracts that couldn’t be improved with glasses and referred him for cataract surgery. The patient was accompanied by his daughter, who was clearly agitated by her father’s loss of independence. This was exacerbated by the fact that he lived in a remote community, away from family, with no public transport available.
I examined the patient and noted elevated intraocular pressures (IOPs) in the context of open angles. Acuities, although poor, improved with pinhole and the cataracts were reasonably advanced. The maculae appeared healthy. However, my heart sank when I saw the optic nerves. The right optic nerve had a cup disc ratio of 0.8 with a close to bare inferior neuroretinal rim. The left optic nerve had a cup disc ratio of 0.95 with very little surviving neuroretinal rim. I knew that even with cataract surgery, the likelihood of this patient being safe to drive again was low.
I took a deep breath and began to explain the cataract and glaucoma diagnosis to the patient. However, very quickly, the daughter interjected, “So once dad’s had cataract surgery he should be able to drive again.. right?”
This case illustrates the devastating impact delayed glaucoma diagnosis can have on a patient and their carers. I knew the loss of driving privileges would have a significant impact on this patient’s independence. I suspected he may even need to move from his current community, where he had lived for decades, to a larger unfamiliar community to be closer to his children.
Could the delay in diagnosis have been avoided? In this case it’s hard to say as his glaucoma may have arisen in between optometry visits, which were relatively infrequent. However, I think it is critical for eyecare providers to take the time to carefully and systematically examine the optic nerves in their patients and, if in doubt, monitor closely with the help of adjunctive testing.
Expedited cataract surgery gave him unaided acuities of 6/6 in both eyes and I was hopeful he might have a reasonable binocular Esterman field test. However, in this I was disappointed (Figure 1).
2. GOOD COMMUNICATION AND THE DOCTOR-PATIENT RELATIONSHIP
Six years ago, when I saw a patient on her first visit, I observed a pleasant 64 year old who was a retired psychologist. She presented with glaucomatous optic nerves in the context of elevated IOPs and open anterior chamber angles. I briefly explained the diagnosis to her and commenced her on a topical prostaglandin. As I monitored her over the years, I noted she was showing progressive deterioration with regard to her glaucoma, despite alterations to her topical medications and adjunctive selective laser trabeculoplasty.
The patient appeared distressed and tearful during many of her appointments and I realised I needed to explore this further. The appointment took significantly longer than normal, however it provided me with some useful insights into her state of mind.
She explained that ever since I had diagnosed her with glaucoma she had been overcome with a deep sense of foreboding about impending blindness, leading to significant anxiety. The way she responded to the anxiety was to pretend not to have the disease. She never discussed her glaucoma diagnosis with anyone and usually discarded her eye drops soon after purchase. This was her way of continuing her disease denial and reducing her anxiety.
I mainly listened, although I briefly tried to reassure her that her risk of significant visual loss would be greatly reduced if she was being monitored and compliant with treatment. However, I think she already knew this, and had insight into her problems with anxiety and disease denial. I believe she simply wanted to be able to share her barriers to glaucoma management without fear of judgement from the listener. This proved to be a pivotal consult. Her compliance seemed to improve based on her self-reporting and her test results. She informed me that she was now talking about her diagnosis of glaucoma with her friends and felt less anxious before and during her consults with me.
I have learnt that taking the time to explore and listen to a patient’s concerns, admittedly challenging in a busy clinic, can deepen a patient’s trust in their clinician. Additionally, listening, and then avoiding the natural impulse to try and fix the problem immediately with a lecture about fears or anxiety being irrational, or non-compliance being irresponsible, can allow the patient to express their concerns without fear of being judged or misunderstood. Once this occurs a patient can often begin to find their own solutions to their anxiety and disease denial.
TIPS FOR GLAUCOMA MANAGEMENT
- Communicating the implications of a glaucoma diagnosis to the patient is vitally important. The Glaucoma Australia website is a wonderful resource that is available to glaucoma patients and clinicians. The website is constantly being updated and provides a wealth of expert information regarding the disease.
- The way an eye care provider reacts to a patient’s admission of non-compliance should generally be non-critical and empathetic, exploring obstacles to compliance and trying to collaboratively find solutions.
- Recognise the burden of ongoing glaucoma monitoring. Glaucoma testing is exhausting for elderly patients and supporting relatives/carers often need to take leave from work. To facilitate rapid testing and minimal patient wait, ensure well run clinics with adequate staff support. Make patients aware of what will happen at their next visit, especially when pupil dilation is required – this can be helpful for patients who plan to self drive.
- Be aware of cues from relatives and carers who may question a patient’s compliance.
3. THERE’S NO SUCH THING AS A ‘HARMLESS DRUG’
I diagnosed primary open angle glaucoma in a 60 year old type 2 diabetic patient on insulin. My initial treatment was daily latanoprost which, while controlling his IOPs adequately, proved to be quite irritating to his eyes. He had no history of heart or lung disease and I therefore switched him to topical timolol. This was just prior to Christmas and I planned to review him again early in the new year.
When I saw him again in late January the following year, I discovered the Christmas period for him had been very difficult. He informed me that he had collapsed without warning and been rushed to hospital on two separate occasions. One of those occasions had occurred on Christmas Day. On both occasions he was found to be very hypoglycaemic. During the second hospital admission, his physician came to the conclusion that systemic absorption of topical timolol had masked the patient’s symptomatic awareness of evolving hypoglycaemia and was preventing him from taking measures to correct the problem. Thus the patient was unaware he was developing hypoglycaemia until the point of collapse.
I’ve come to realise that when changing medications, the eye care provider needs to balance the risks against the benefits and ensure the patient is informed about potential problems. I’ve also learnt that when IOP measurements and optic nerve studies suggest well controlled glaucoma,
it is easy for both patient and clinician to overlook another common problem. I’m referring to the insidious encroach of prostaglandin orbitopathy and worsening ocular surface disease.17 The results of a recent randomised controlled trial comparing selective laser trabeculoplasty and topical medication for initial glaucoma treatment are a timely reminder that there is a reasonably safe and efficacious alternative to topical treatment.18
Dr Simon Phipps MBBS, FRANZCO, works in private practice at The Goodwood Eye Centre in Adelaide. He also consults at a regional country public hospital on a monthly basis. He undertook general ophthalmology training in South Australia, completed a glaucoma fellowship at Moorfields Eye Hospital, London, United Kingdom, and a refractive surgery/anterior segment fellowship at The Gimbel Eye Centre in Calgary, Canada.
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- Staso S Di, Agnifili L, Cecannecchia S, Gregorio A, Ciancaglini M. In Vivo Analysis of Prostaglandins-induced Ocular Surface and Periocular Adnexa Modifications in Patients with Glaucoma. In Vivo 2018 March-April
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