Models of glaucoma care: ensuring patients are at the centre
Glaucoma is second only to age-related macular degeneration as a cause of blindness in the UK [1]. There are over one million glaucoma related outpatient visits each year just in England, one per cent of all NHS outpatient visits [2]. New estimates suggest that the number of people with glaucoma in the UK will rise by 44 per cent between 2015 and 2035. This will be accompanied by a 16 per cent rise in individuals with ocular hypertension (OHT) and 18 per cent rise in those with suspected glaucoma [3].
RNIB is hosting a policy roundtable, on 28 February 2017 in Manchester, in which invited experts consider how the patient perspective can be at the heart of considerations when developing optimal models of glaucoma care.
This brief is produced by RNIB resulting from a rapid review of published literature (Appendix 1 describes the methodology used) looking at evidence relating to the patient’s experience of innovative models of glaucoma care. It identifies a series of questions to focus discussion during the roundtable. The event is sponsored by Specsavers.
Information from this and four other roundtable discussions will be collated into a formal report to submit to the All Party Parliamentary Group on Eye Health and Visual Impairment’s Inquiry into capacity issues in ophthalmology.
What challenges do patients experience in accessing diagnosis and care?
Estimates suggest up to half of people with glaucoma do not have their condition detected [4, 5]. Early detection and treatment is crucial to prevent of sight loss. Patients report finding the eye care system difficult to navigate and fragmented [6]. Entry to the eye care pathway is usually through visiting a high street optometrist [7]. Yet people over 65 living in socio-economic deprivation are less likely to attend for an eye examination [8]. The retail dimension of optometry can be a barrier for people who are experiencing deprivation, who describe rationing their use because of concerns about the cost of spectacles [7]. People experiencing poverty present with later stage glaucoma [9, 10].
Once people have accessed the Hospital Eye Service (HES) the challenges to capacity mean they may experience long waiting times, particularly for follow up appointments [3]. Clinics frequently reschedule appointments [11]. Delayed follow-ups can result in deterioration of vision and have resulted in patients losing sight [12, 13].
Glaucoma requires lifelong care. In addition to being a significant burden on the health care system glaucoma can be a difficult condition for patients to manage [14]. During the early stages there are often no symptoms, yet the condition requires attendance at regular monitoring appointments and adherence to treatment. Treatment regimes can be difficult for patients to consistently adhere to [15].
What alternative ways of delivering care are in place?
Case finding
Screening the general population for glaucoma is not seen to be cost effective [16], so opportunistic sight testing in community optometry remains the primary way in which indications of glaucoma are picked up. There is, however, no definitive set of tests to establish glaucoma and subjective judgement is required. Referrals into secondary care have had high numbers of ‘false positives’, with over 40 per cent being discharged at the first visit [17]. Ensuring that the right individuals are referred into secondary care will optimise use of resources, and create capacity. In response, many areas (estimates suggest around two thirds [3]) have already adopted ‘Glaucoma referral filtering’models:
Repeated measures has community optometrists retesting patients, such as for IOP measures, before referring those with confirmed indications of suspect glaucoma to secondary care. NICE recommend this approach [18]. Reductions in referrals of over seventy per cent can result [19, 20] alongside a significant financial saving [21].
Referral refinement schemes train community optometrists, or other health care professionals, to be specialists in detecting and diagnosing glaucoma, and making effective referrals straight to secondary eye care when appropriate. They may see patients in their own practice, or from other practices locally. Referral refinement also happens in secondary care: hospital optometrists, ophthalmic nurses or technicians can triage patients according to the urgency with which they should be seen by the consultant ophthalmologist.
Evidence about the cost effectiveness of referral refinement schemes is mixed ‘from cost-neutral, to producing a small or substantial saving’ [21]. Developments in screening technology can contribute to reducing false positives [22].
Monitoring and treatment
OHT and glaucoma can remain stable over long periods, requiring monitoring. Models of care have been implemented which transfer monitoring of low or medium risk individuals to a range of health care professionals: optometrists, or other external providers, in the community; ophthalmic nurses, technicians or optometrists in the hospital eye clinic. Training is usually comprehensive and frequently support from the consultant is available, in situ or remotely using IT (‘virtual clinics’), to review or advise on patient care. In some instances, the health care professionals can instigate treatment, which is then reviewed by consultants [23].
The Royal College of Ophthalmologists’ The Way Forward glaucoma report [3] refers to virtual clinics, now widespread, as potentially negating the benefits of shifting care from the HES. Such schemes can reduce HES waiting times, emergency appointments and ‘Did Not Attends’ [24] and still provide patient support if the health care professional discusses side effects and compliance [25].
Do patients get the same quality of care from different service models?
Referral refinement
Comparisons of diagnostic decisions find that specialist community optometrists, with additional training, can reach a similar standard to consultant ophthalmologists [21]. Such schemes can reduce the number of ‘false positive’ referrals to HES and discharge rates after the first visit [3, 21, 26]. Robust data on ‘false negatives’, those patients whose glaucoma is missed, is lacking; but there are some suggestions that optometrists may miss subtle symptoms [21].
Monitoring
A number of studies e.g. Gray and colleagues in Bristol; Mandalos and colleagues in Cambridge; Roberts and colleagues in Peterborough, have observed models of care where community optometrists have a role in monitoring patients with OHT or stable glaucoma, and found them to deliver acceptable levels of care, in line with usual models [21, 27, 28, 29]. Review by consultant ophthalmologists could increase safety, picking up any missed patients who should be referred back into HES [29, 30].
Are there benefits or risks for patients?
Referral refinement
Referral refinement schemes, which use specialist community optometrists, can benefit patients by reducing waiting times [21, 31]; reducing travelling times [21] and distance [31].
Monitoring
Where patient satisfaction with care provided by health care professionals has been measured, it has been found to be high [21, 33] or equivalent [27]. Waiting times and distance to travel can be reduced [34]. There is minimal evidence about the support patients receive in relation to adherence to treatment regimes in different models of care. Although it cannot be assumed that health care professionals schemes will inevitably provide more time or support for patients [33]. There is a suggestion that patients’ non attendance (DNA rates) for monitoring appointments might be higher in community optometry models [29].
Virtual clinics may reduce length of visit and have a high patient satisfaction [3, 25, 35].
Do some patients benefit more than others?
Currently significant numbers of people with glaucoma are failing to access care [5]. We know that lower socio-economic status is associated with late presentation of glaucoma and thereby blindness [5, 36]. People of African and Caribbean ethnicity have a higher risk of developing glaucoma [37] and are more likely to present late [38]. ‘The Way Forward’ document [3] raises the important question of whether ‘we are utilising a lot of capacity picking up disease earlier and earlier in certain demographics who take up NHS funded sight tests readily’ while missing those with greater need.
What are the ways to ensure patients get the best care?
The following elements appear to contribute to the success of extended models of diagnosis care:
- Training appropriate for the level of service: In referral refinement and, especially, monitoring schemes, ophthalmologists usually provide training, which maybe through development of online courses, workshops and face to face observations to participating optometrists and other health care professionals, often resulting in accreditation. Significant time has often been committed by specialist ophthalmologists to develop and deliver programmes, and from optometrists and nurses to participate [21]. Staff turnover can be frustrating, and undermine sustainability [3, 21]
- Involvement of ophthalmologists: Studies have shown benefit from involving ophthalmologists in shared care schemes [28, 29]. ‘The Way Forward’ [3] describes leadership and ownership from ophthalmologists as ‘the single most important factor that determines the success of any service design’.
- Good communication and trust: Effective communication of clinical information [4, 39], good working relationships [40] and trust between partners in models of care are important. Patients will accept not seeing a consultant where they are reassured by their interaction with the alternative care provider and have trust in the relationship [25].
- Information technology (IT): Good IT is essential for the transfer of patient information, especially in the case of ‘virtual clinics’ [3]. The College of Optometrists’ report ‘The optical professions: what does the future hold?’ [41] makes an urgent call for greater secure connectivity.
- Remuneration: Optometric practices are private businesses, to enable sustainability schemes involving community optometrists need to ensure payment structures are in place to provide adequate compensation [42].
- Clear protocols and guidance: Having in place clear protocols for when patients are referred into HES, either for referral refinement or monitoring schemes, is important [21,29,39]. Simply issuing guidance to community optometrists isn’t sufficient to change practice [43]
- Accessibility to patients: Location, availability of parking and public transport, and opening hours are important practical considerations [3, 4].
Gaps in the evidence
There are still significant gaps in the evidence around models of care. These gaps need to be addressed to ensure patients receive the best care.
- Cost effectiveness: Cost effectiveness of schemes is important to ensure the best use is made of public resources to enable optimal patient care. There is an increasing body of literature reporting the economic evaluation of different models of care however further work is needed to establish cost effectiveness [21]; especially as technological developments are likely to have a significant influence on cost.
- Equity of access: There is evidence that current models of care do not reach those living in poverty [3, 36]. Further research needs to examine how different models of care impact on equity of access [21].
- Supporting patients’ adherence to treatment: Ensuring all monitoring schemes provide patients with support to adhere to treatment is critical [44]. The published literature around models of glaucoma care contains minimal information about the support offered to patients around adherence.
What do we still need to know about models of glaucoma care to ensure patients get the best outcomes?
1. How do we ensure people most at risk of avoidable sight loss get access to early detection, diagnosis and treatment?
2. How can commissioning ensure patients receive support for self-management and adherence to treatment?
3. How can patients have a voice in commissioning decisions about models of glaucoma care?
4. How can we overcome barriers to commissioning optimal models of care?
Authors:
Helen Lee, Catherine Dennison, Puja Joshi and Kate Flynn. RNIB
Appendix 1 Methodology
PJ and KF carried out the searches to identify relevant material published in, and since, 2000, using the search engines PubMed and Science Direct. The following key words were used: Glaucoma, Service*, Shared Care, Enhanced, Community, Patient*, Diagnosis*, Ophthalmology, Optom*, Referral*, Consultation*, Outcome, Evaluation, and Local. Over a hundred peer reviewed papers, reports, guidance documents and articles were identified. Reference lists were hand-searched.
A data extraction template was designed which gathered information on study design, target group, professionals involved, emerging learning re safety, quality, cost, patient perspective. Due to limited time available to carry out this review most papers were reviewed by only one author.
HL and CD carried out the rapid reviewing and wrote this paper.
Appendix 2 References
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