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HomeminewsGlobal Retinal Network Program Emphasises Patient Perspective

Global Retinal Network Program Emphasises Patient Perspective

The role of patient and carer education in achieving compliance with treatment for macular disease was emphasised at Bayer’s Global Retinal Network Program in Sydney from 22–23 June.

Over 250 ophthalmologists attended the annual conference to hear international experts including Professor Peter Kaiser from Cole Eye Institute in the United States, Assistant Professor Dr Voraporn Chaikitmongkol from Chiang Mai University Thailand, and Associate Professor Varun Chaudhary from McMaster University, Canada. A strong line up of Australian speakers included Professor Paul Mitchell, Associate Professors Andrew Chang, I-Van Ho and Peter van Wijngaarden, and Dr Amy Cohn.

although patients will tell you they understand your advice, many continue to believe treatment will only last a few months

The program, which was dedicated to retinal disease, covered key industry advances and new ways to diagnose patients, with interactive panel discussions presenting both clinician and patient perspectives on key clinical issues.

The conference began with a session on achieving optimal outcomes in neovascular age-related macular degeneration (nAMD) by Professor Mitchell. He spoke about the challenges that doctors encounter when trying to achieve patient persistence and adherence to treatment.

Prof Mitchell said the impact of vision loss is psychological and physical, affecting a person’s ability to work and integrate socially, and their independence. Additionally, he said vision loss comes with a higher risk of mortality. The impact on quality of life is substantial, and relatively close to serious medical conditions like cancer and post myocardial infarction. Yet data from Professor Mark Gillies’ Fight Retinal Blindness Study! shows that more than 20% of nAMD patients stopped attending for treatment at the end of 12 months and PBS data (2013-218) shows that at the end of three years, that number increases to 50%.

Prof Mitchell said loss of persistence starts very early on – within the first few months of therapy – however, the longer a person remains on therapy, the more likely they are to continue.

The problem with real world studies is no one is really seeing the patient every month…

“So look at the first period of injection treatment and keep them on board to ensure they don’t lose interest,” he said, adding that patients need to be made more aware, from the time of diagnosis, that nAMD is a chronic disease and treatment will be ongoing for many years. Prof Mitchell said although patients will tell you they understand your advice, many continue to believe treatment will only last a few months. They need to be fully informed, and reminded, repeatedly, of the need for ongoing treatment.

Associate Professor Andrew Chang reinforced Prof. Mitchell’s key messages by speaking about the impact of vision loss and burden of treatment on carers.

He acknowledged that early on in his career, he had not realised the significant toll of caring for a person with vision loss.

“Carers have to cope with the demands of vision loss as well as the treatment of vision burden. There are emotional aspects, sacrifices, and impacts on relationships. Carers are often the partners of patients and yet they have their own health issues – depression, arthritis, and hypertension. Children who care for their parents are stressed – they have to provide support and transport to parents, they have to take time off work to do this and sometimes they need respite,” said A/Prof Chang.

He said children of people with vision loss are often very interested in education about treatment and with knowledge, can be supportive in terms of achieving treatment adherence and assisting with daily living.

Professor Peter Kaiser reviewed several global studies looking at treatment protocols for nAMD and stressed the importance of a loading dose of three monthly anti-VEGF injections until their retina is stable before following up with a treat and extend regime.

“Studies show that the first few injections are very important – patients that did get a loading dose do better long term than patients that didn’t get it,” he said. The three month pre-loading schedule often referred to is indicative only, because every patient is different. Some patients may need an anti-VEGF injection every month for 20 or more months – this is not a sign of the surgeon’s failure to treat the patient appropriately, but rather, indicative of the individual’s disease.

Although in the first year, treat and extend shows no additional benefit to other protocols, the benefits come in years two, three and four, when there is less treatment burden on patients and carers. Prof Kaiser pointed to recent studies, which have shown that 40% of patients were able to maintain their treatment interval at 16 weeks to week 96.

Prof. Kaiser warned surgeons against using a PRN (as required) treatment protocol, referring to it as “the worst thing you can possibly do”. “The problem with real world studies is no one is really seeing the patient every month, so (the surgeon says), ‘we’ll see you in two or three months but if you see any changes to your vision come in earlier’. Leakage will precede the patient noticing they have vision loss – and by the time you treat, you’re well behind the problem that’s occurring.

Prof Kaiser referred to a paper presented by Professor Usha Chakravarthy at the recent meeting of The Association for Research in Vision and Ophthalmology. The paper looked at whether fluid fluctuations from leaking blood vessels matter and found that allowing fluid to persist leads to worse visual outcomes and increases the risk of fibrosis.

“We did not know the latter – if we allow patients to keep going back and forward with leakage – we currently have no treatment for fibrosis,” he said.

PCV CHALLENGES

The conference continued with presentations on polypoidal choroidal vasculopathy (PCV), diabetic eye disease, artificial intelligence and integrative, multidisciplinary patient care.

On the challenges of diagnosing and managing polypoidal choroidal vasculopathy (PCV), Associate Professor I-Van Ho said there is currently no universally accepted definition of PCV and as a result, PCV may be under-diagnosed by clinicians.

This vascular disease of the choroid is most prevalent in Asians (up to 60%) and, to a lesser extent, Caucasians (up to 15%) and tends to relapse and recur over time. About 50% of cases can remain stable without treatment, however long term, a lot of them can lead to vision loss due to severe haemorrhages.

“So they can remain an indolent course but they can also be quite aggressive, unlike typical AMD,” he concluded.

Assistant Professor Voraporn Chaikitmongkol said the gold standard in diagnosis of PCV is indocyanine green angiography (ICGA) which is invasive, time consuming, and, due to expense, not available at many retinal centres around the world. Diagnosis can also be made using optical coherence tomography, fundus examination and fundus fluorescein angiography. Treatment is with anti-VEGF injection, which if necessary, can be combined with photodynamic therapy (PDT). ICGA diagnosis is necessary if the aim is to treat PCV with photodynamic therapy.

Professor Mitchell concluded the session by looking at a number of studies analysing treatment of PCV. He said PDT was the standard of care for treatment of PCV before the advent of anti-VEGF, however it had been associated with PCV recurrence, deterioration of visual acuity, and the risk of complications such as geographic atrophy. He said in treating PCV, there is no need to eradicate the polyps, they simply need to be rendered inactive for people to do well.

“In Australia our first treatment of choice would be monotherapy and the data shows we can be comfortable with that. My suggestion is, don’t do ICGA at the beginning. I would wait and, three months down the track, if there is still a problem, I’d do an ICGA to definitively diagnose PVC, (and then consider PDT).”

The Global Retinal Network Program will return to Sydney in 2020.

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