Childhood glaucoma is rare and difficult to manage, with this survey identifying 85 new cases in Scotland over a 2-year period. The most common forms of glaucoma recognised were glaucoma associated with acquired conditions, particularly uveitis, and glaucoma following cataract surgery. 28 ophthalmologists responded to the survey, meaning on average consultants saw only 1.5 children with glaucoma per year. This is a very low number of patients, and likely below the number necessary to maintain skills in optimal management. It is important to emphasise that some responders saw considerably more patients and that our survey was aimed at determining the number of new diagnoses of glaucoma and not the overall exposure of consultants to children with a known glaucoma diagnosis. Nevertheless, perhaps due to the low number of children seen, few ophthalmologists responding to the survey reported feeling comfortable performing glaucoma surgery in children and few had performed any surgical glaucoma procedures for children in the previous 2 years. No responders were comfortable performing goniotomy or trabeculectomy, only 4 were comfortable performing trabeculectomy in children, and only 3 comfortable performing glaucoma drainage device surgery.
Surgery, when required, is normally performed in a high-volume tertiary centre by sub-specialist ophthalmologists.In keeping with a trend for subspecialisation within most paediatric surgical disciplines, by concentrating patients into a few centres it is likely a greater quality of care can be achieved. One of the principal downsides to this approach is the need for patients and their families to travel long distances on a regular basis, which can be costly and inconvenient as appointments are likely to clash with school and work commitments. Scotland has a relatively low population density compared to England and so it is important to consider the number of patients with childhood glaucoma and whether this would be enough to sustain a specialist unit. 85 new cases of paediatric glaucoma of all subtypes were reported in Scotland over a two-year period by 28 ophthalmologists. Due to the response rate to the questionnaire, it is possible that this is an underestimation of the volume of childhood glaucoma in Scotland. 13 of these children required surgery that could only be performed in England. The 2011 census recorded 854,000 children under the age of 15 in Scotland. This would suggest an incidence of just over 5/100,000 new cases of childhood glaucoma in Scotland.
In comparison to the BIG Eye study published in 2007, a significantly higher proportion of secondary paediatric glaucoma was reported in Scotland. 74 cases out of 85 (87%) were secondary glaucoma in comparison to 52 cases out of 99 (52.5%) as reported in the BIG Eye study.[4] However, the breakdown of the different subtypes of secondary glaucoma was similar. Lens-related and uveitic glaucoma were by far the most common (Table 1).
Comments from respondents further imply that the paucity of cases in individual ophthalmology units leads to a lack of experience and subsequently a lack of confidence by most clinicians. One respondent commented:
‘Numbers are so low- challenge to keep up skills to provide highest quality care. Best left to high volume units to deal with this uncommon yet serious problem.’
The final question of the survey examined the respondents’ feelings towards the development of a tertiary referral centre for paediatric glaucoma in Scotland. 85.7%(24/28) of respondents felt that Scotland needed a tertiary paediatric glaucoma service to manage these cases. In these cases, most respondents commented they felt Scotland should have a ‘centre of excellence’ for paediatric glaucoma.
‘I feel that 1 centre should be able to offer a national paediatric glaucoma service including goniotomies and cyclodiode laser. Whether tubes can be done here depends on numbers of cases.’
‘These conditions are rare but devastating. We should move to one centre of excellence for Scotland.’
‘Even just a basic goniotomy/tubes service would probably be enough, I wouldn’t mind sending really rare anterior segment cases or refractory cases to England. A single centre would be ideal in order to have sufficient case load.’
Of the remaining 4 respondents, 2 (7.1%) felt that Scotland did not need a tertiary referral unit for paediatric glaucoma and 2 (7.1%) did not respond. Comments from these respondents expressed concern that there were insufficient patient numbers to justify a tertiary centre. One respondent stated they were happy with their current arrangement of referring paediatric glaucoma patients to services in England.
‘My feeling is that the current arrangements in place for referring to London have been well received by patients’ families; they have had a good service.’
‘Any arrangement in Scotland would have to be linked with a big centre in England. The whole population of Scotland is smaller than the big cities in England.’
One respondent commented on some of the necessities in setting up a tertiary referral unit in Scotland and what would be required in order to provide a safe and holistic service.
‘Paediatric ophthalmology colleagues are best placed to manage these patients given their close links with general paediatricians and the facilities to appropriately manage concurrent amblyopia and I would suggest a paediatric ophthalmologist with an interest in glaucoma rather than the other way round would be able to provide the best service.
If a post(s) were to be established in Scotland, consideration would need to be given to having the proper support infrastructure including nursing expertise, parental support and flexible anaesthetic cover to manage these very challenging patients safely.’
It is important to emphasise the limitations of the study including that the survey relied on clinician’s recalling numbers of patients seen and the results of the survey are limited by a response rate of only 56%. When considering the small numbers of children with glaucoma, it is possible that results may be significantly affected if one or two surgeons who saw large numbers of children with glaucoma failed to respond. To reduce the risk of this occurring we personally contacted surgeons already known to be seeing children with glaucoma to ensure that they had completed the survey.