The coronavirus pandemic has triggered a seismic shift in the way ophthalmologists interact with their patients, forcing them to think on their feet and find ways to quickly adapt their workflows.
However, as the crisis continues, it is becoming apparent that some of the changes they have had to make, such as increasingly opting for virtual consultations, could become more permanent, as evidence of their benefits to doctors and patients alike starts to mount.
Arguably, the pandemic has paved the way for greater opportunities for positive change within ophthalmology and indeed, in healthcare in general.
I asked Prof. Mariya Moosajee, consultant ophthalmic surgeon and clinical academic ophthalmologist at Moorfields Eye Hospital, London, how her working life has changed and how those who specialise in providing services for genetic eye disorders can continue to provide the best care for their patients both during the pandemic and beyond.
Prof. Moosajee’s speciality is genetic eye disease, so the majority of her patients have been deemed non-urgent during the pandemic.
A lot of such patients across the UK have seen their appointments cancelled, but Prof. Moosajee decided to consult all her patients virtually from the start of the crisis.
How have you had to adapt your workplace during the pandemic?
I have been able to work from home and consulted patients either by telephone or using ‘NHS attend anywhere,’ a secure web-based platform for patients with pre-arranged video consultation appointments, that was nationally funded by National Health Service (NHS) England and NHS Improvement to support NHS trusts and foundation trusts in their response to the COVID-19 outbreak.
I hold my clinics at the same time as they would have been held pre-COVID-19 and allocate patients to my team. I then meet with my colleagues at the end of every clinic on Microsoft Teams so that they can present each case.
We discuss the patients’ future management as a multidisciplinary team; we have a family support officer; a developmental paediatrician; a genetic counsellor; an extended role orthoptist; a low vision optometrist and a paediatric ophthalmology fellow. If we feel our patients need a low vision assessment or specific paediatric input (as a vast number of genetic eye disease patients have systemic features), then the relevant personnel will follow up the patient with a further phone call. It has worked really well; we have consulted 220 patients in total: 150 children and 70 adults with genetic eye disease.
We are restarting face-to-face clinics in the next month. At that stage we will have prioritised patients that will need to come in for clinical assessment and to give blood samples for genetic testing.
Adults who have had recent ophthalmology assessments locally or in other services at Moorfields can be sent blood packs which enables them to take their own blood without having to travel into London and send the sample back to us so we can process it for genetic testing. In fact, the whole process can be undertaken remotely.
What are your views on virtual consultations?
I have been pushing for virtual consultations in genetics for a long time. Prior to COVID-19 (last April–June 2019), we undertook a patient-reported survey with just over 100 paediatric or adult participants, who were either new or follow-up patients, to ascertain their views on virtual consultations and their acceptability.
We found that over 65% percent of participants prefer to have their investigations carried out locally, followed by a virtual consultation with specialists at Moorfields Eye Hospital for the review of these results. Adult participants favour video calls, with contact via the telephone being the least popular response.
The opposite is true for parents and guardians of children, who prefer contact via telephone over video call. There was no difference between the views of new or follow-up patients. Interestingly, despite most patients preferring virtual contact, the majority do not want to be seen virtually for every appointment until a treatment or trial becomes available.
What innovations do you think might be needed in the future?
I do not think we can go back to the way we were working. We can greatly increase our efficiency and patient experience by a combination of virtual and face-to-face consultations.
Patients do not want to wait for hours to have imaging and see a consultant, but they definitely want to see specialists who know about their rare genetic eye condition and who can assess the results of investigations undertaken locally, as well as inform them of the latest research and trials.
The long, detailed records we take in genetics on the onset and progression of symptoms, and prenatal, birth and family history can all be undertaken virtually. Genetic counselling is also a lengthy process that involves an unrushed conversation to ensure patient understanding of the complex topic of inheritance and genetic mutations, informed consent and family planning.
Studies in cardiac and oncogenetics in the Netherlands showed high levels of patient satisfaction for those receiving virtual genetic counselling. I would strongly recommend Telegenetics moving forwards.
In the UK, genomic medicine services are being introduced across all medical specialities, funding for genetic testing is becoming centralised and whole genome sequencing will soon be available to most patients on the NHS. We are trying to encourage more ophthalmologists around the country to order genetic tests for patients.
Moorfields Eye Hospital is also hoping to provide a virtual genomic service to ophthalmologists, to offer guidance and advice on how to manage genetic eye disease patients locally without the need to send them to tertiary referral centres unless necessary. I think this will be a huge step forward for patients who have previously not been able to access genetic services due to local funding restrictions.
I have also created an open access web-resource called Gene.Vision, which is an A-Z of genetic eye disease with two interfaces; one for healthcare professionals and the other for patients. The version for patients includes in-depth sections on how to cope with sight loss and associated aspects of daily life that can be affected, such as driving, education and employment.
The aim of the resource is to feature the signs; symptoms; genetic causes; patient management; referral needs; current information on research and trials for a disease/gene; and any support groups that would be beneficial for the patient, for each genetic eye disease. It has been tested by patients with sight loss with input from digital accessibility consultants, one of who is deaf-blind with Usher syndrome. It will be launched next month (www.gene.vision).
How can you best serve your patients during the pandemic?
Most genetic eye disease patients had their appointments cancelled during the lockdown. When you are forced into isolation, it can cause some individuals to focus more strongly on their own health and well-being.
Calls to sight loss charity helplines increased but they had no expertise to answer the medical queries. So, I offered to undertake a voluntary weekly ‘Ask the expert session’ for Retina UK, Microphthalmia, Anophthalmia and Coloboma Support (MACS) charity and Aniridia Network.
I spoke to at least six patients per session and every caller had a valid reason to get in touch; issues raised included not getting access to expert services, deterioration in vision and interestingly, I received a number of calls from patients who were experiencing increased visual hallucinations as part of Charles Bonnet syndrome (CBS). Based on this anecdotal evidence, we undertook a survey of 45 elderly patients with sight loss due to CBS, with over 40% of them having macular-related disease.
We found that:
Over 55% of patients reported increased frequency of visual hallucinations;
Approximately 50% had alterations in the nature of their hallucinations and emotional response in terms of more sinister hallucinations, with more associated fear and anxiety; and
Nearly 70% felt greater feelings of loneliness but 60% had not accessed support services.
It is clear from this that we must learn to stay connected with our patients, ensuring they do not feel isolated. Sending a letter of cancellation or discharge is not appropriate during these difficult times. A phone call by an eye clinic liaison officer or genetic counsellor can be very gratefully received by patients. Sight loss charities may be able help in this regard but, like many, they have been suffering from reduced income and furloughed staff.
Prof. Mariya Moosajee, MBBS, BSc, PhD, FRCOphth
Professor Moosajee has no financial disclosures.