Abstract
Introduction
Local Optometric Support Unit (LOCSU) have published their refreshed clinical pathway for eye care for people with a learning disability. The document sets out the adjustments to practice that a community optometrist might make in order to provide optimal care for a person with learning disability attending a primary eye care assessment. The pathway specifically points to the need to retain patients in primary care where appropriate and ‘reduce the number of people with learning disability who are inappropriately referred into the Hospital Eye Service (HES).’ Pivotal to this refreshed pathway is the integration with secondary care, with local arrangements to facilitate referral and hospital management where appropriate. There are few ophthalmologists nationally who frequently encounter patients with a learning disability in their hospital practice and knowing where to start when creating referral criteria or KPIs may create a barrier to services becoming established. In order to address this gap in experience, we set about developing a set of consensus statements regarding referral thresholds for ocular conditions commonly encountered in adults with learning disability.
Method
A series of video interviews were undertaken with eye health professionals with a range of experience in eye care for people with learning disability. Each contributor commented on the usability and clarity of each element of the referral criteria. In addition, each contributor was asked to express the overriding principles by which they make decisions regarding referral thresholds for patients with learning disability. These were collated into the final document which was circulated and agreed by all participants.
Results
A table setting out referral thresholds for commonly encountered eye conditions in adults with learning disabilities is presented.
Conclusion
We have presented a succinct set of consensus statements relating referral thresholds for common presentations of visual problems in adults with learning disability in the UK distilled from the collective experience of a group of eye health professionals. The intention was not to present a comprehensive review of management of each condition. Rather, the consensus statements may form the starting point from which each area could develop locally agreed criteria, as is suggested by the LOCSU pathway guidance.
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Introduction
People with learning disability in England number ~1.2 million [1]. They face significant health inequalities [2]: people with a learning disability are ten times more likely to have vision problems than the rest of the population [3]; over fifty percent of those with learning disability who died prematurely had a visual problem [4]. Compounding this increase in prevalence of eye disease is research showing that people with learning disability are less likely to have access to eye care than the rest of the population [5, 6]. There are several reviews in the ophthalmic and optometric literature which detail the prevalence and incidence of specific conditions in both paediatric and adult populations with learning (or intellectual) disability [5, 7,8,9,10,11]. People with learning disability have a right to equal standards of health care by law [12]. Several groups, including the Royal College of Ophthalmologists, have called for changes to policy and the whole eye care pathway to allow patients to access services and receive equality of care [13, 14].
In order to address this, the Local Optometric Support Unit have published their refreshed clinical pathway for eye care for people with a learning disability [15]. The document sets out the adjustments to practice that a community optometrist might make in order to provide optimal care for a patient with learning disability attending routine primary eye care. A key difference with this refreshed guideline compared with its predecessor is the ambitious aim to improve integration between primary eye care and hospital eye services.
By providing services through the LOCSU scheme, the optometrist is agreeing to use their professional judgement and reasoning, drawing on their training and relationship with hospital eye services to determine if the patient would benefit from further assessment by the hospital eye services.
When a local pathway is newly established, it is anticipated that for the majority of patients, the optometrist will be meeting the patient for the first time and there will be little in the way of previous records. Few patients with learning disability achieve ‘normal’ vision [9, 16,17,18,19] and it is likely that a high number of ocular abnormalities will be detected [9, 20,21,22]. Some patients will require hospital eye services for assessment, treatment or registration for sight impairment; but for others with longstanding or congenital ocular abnormalities, referral into the hospital eye service will add little value and be stressful for the patient and carer.
Within the LOCSU pathway lie key performance indicators (KPIs) which are to be reported quarterly. These include the percentage of patients referred from the LD community eye care service into secondary eye care, the target for which is set locally. In order to facilitate this, dialogue between primary and secondary care will need to take place to establish what referrals would be considered to add value to the patient or carer.
There are few ophthalmologists nationally who frequently encounter patients with a learning disability in their hospital practice and knowing where to start when creating referral criteria or KPIs may create a barrier to services becoming established. In order to address this gap in experience, we set about developing a set of consensus statements regarding referral thresholds for ocular conditions commonly encountered in adults with learning disability.
Method
Eye Health Professionals known to be involved in the community and hospital management of adults with learning disability were approached and invited to participate. The group comprised two specialist learning disability optometrists, two community optometrists and two consultant ophthalmologists. A series of telephone and video interviews were undertaken by one of the authors (RP). A baseline for referral thresholds was drawn up, based on those previously agreed by consensus for the NHS England Special School Eye Care Programme (unpublished). Each member of the group commented on the usability and clarity of each element of the referral criteria and any additional research or evidence which might support the referral threshold. In addition, each contributor was asked to express the overriding principles by which they make decisions regarding referral thresholds for patients with learning disability. Individual comments were collated into the final document which was circulated and agreed upon by all participants.
Results
Overriding principles
The referring optometrist should consider each of these questions when determining if the patient would benefit from referral into the Hospital Eye Service (HES).
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Are there any new findings – has the patient previously been seen by HES?
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Has there been a change in function noted by the patient, carers, family?
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Is this likely to impact the patient’s social function and activities of daily living?
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It is a stable or progressive condition?
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Is there any treatment that could be started in the community which would not necessitate referral into the HES? (including advice, spectacles, rehabilitation, low vision appliances.)
The table below lays out the suggested referral thresholds and accompanying notes for common ocular conditions found in patients with learning disability.
Conclusion
The aim of the LOCSU pathway is to raise awareness of, and improve access to, eye care for people with learning disability. It offers an opportunity to identify those patients for whom intervention or support can be offered, in the community or hospital eye service; be that spectacles, low vision support, baseline assessment from which future change can be measured or progressive, treatable eye disease.
In order for a pathway to improve access to eyecare to be successfully implemented, it is necessary to raise awareness of both the likely barriers that patients, carers and eye health professionals may encounter, and highlight existing guidance, research and good practice in overcoming these barriers. Most ophthalmologists in the UK have occasional exposure to patients with learning disability and will be seeking a place from where to begin conversations with their local optometric committees.
We have presented a succinct set of consensus statements relating referral thresholds for common presentations of visual problems in adults with learning disability in the UK distilled from the collective experience of a group of eye health professionals (Table 1). The intention was not to present a comprehensive review of management of each condition. The consensus statements may form the starting point from which each area could develop locally agreed criteria, as is suggested by the LOCSU guidance [15]. A future extension of these consensus statements may be to develop an accepted minimum dataset for patients seen within the LOSCU learning disability pathway. This would enable the development of population-based data, including prevalence of ocular conditions in the learning disability population, enable robust evidence collection on the impact of interventions and point to areas for future research. The recent expansion into telephone or video consultations which have proved successful in many areas offers alternative delivery options which may be more accessible to patients and carers and lend opportunity as a reasonable adjustment to face-to-face hospital visits.
Summary
What was known before
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Adults with learning disability have a higher prevalence of sight impairment than the general population, yet are less likely to access primary eye care.
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The key to a successful community eye care service for adults with learning disability is close integration with secondary eye care.
What this study adds
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Referral thresholds indicating which patients would benefit from referral into secondary care are presented.
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Local Eye Health Networks or Integrated Care Systems may consider using these as a starting point when commissioing a service.
References
Mencap. Research and Statistics ‘How common is a learning disability’, 2020.
Emerson E, Baines S. Health Inequalities and people with learning disabilities in the UK: improving health and lives: learning disabilities observatory, 2010.
Emerson E, Roberston J. The estimated prevalence of visual impairment among people with learning disabilities in the UK: improving health & lives: learning disabilities observatory, 2011.
Heslop P, Blair P, Fleming P, et al. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). In: Health Do, ed.: Norah Fry Research Centre, 2013.
Donaldson LA, Karas M, O’Brien D, et al. Findings from an opt-in eye examination service in English special schools. Is vision screening effective for this population? PLoS One. 2019;14:e0212733 https://doi.org/10.1371/journal.pone.0212733. [published Online First: 2019/03/12]
Li J, Wong K, Park AS, et al. The challenges of providing eye care for adults with intellectual disabilities. Clin Exp Optom. 2015;98:420–9. https://doi.org/10.1111/cxo.12304. [published Online First: 2015/09/24]
Salt A, Sargent J. Common visual problems in children with disability. Arch Dis Child. 2014;99:1163–8. https://doi.org/10.1136/archdischild-2013-305267. [published Online First: 2014/08/29]
Evenhuis HM. Medical aspects of ageing in a population with intellectual disability: I. Visual impairment. J Intellect Disabil Res. 1995;39:19–25. https://doi.org/10.1111/j.1365-2788.1995.tb00909.x. [published Online First: 1995/02/01]
Woodhouse JM, Adler PM, Duignan A. Ocular and visual defects amongst people with intellectual disabilities participating in Special Olympics. Ophthalmic Physiol Opt. 2003;23:221–32. https://doi.org/10.1046/j.1475-1313.2003.00110.x. [published Online First: 2003/05/20]
van Splunder J, Stilma JS, Bernsen RM, et al. Prevalence of ocular diagnoses found on screening 1539 adults with intellectual disabilities. Ophthalmology. 2004;111:1457–63. https://doi.org/10.1016/j.ophtha.2003.12.051
Warburg M. Visual impairment in adult people with intellectual disability: literature review. J Intellect Disabil Res. 2001;45:424–38. https://doi.org/10.1046/j.1365-2788.2001.00348.x. [published Online First: 2001/10/27]
UK Public General Acts. Equality Act, 2010.
Ophthalmologists RCo. Ophthalmic service guidance: eye care for adults with learning disabilites 2015. https://www.rcophth.ac.uk/wp-content/uploads/2015/09/Eye-Care-Services-for-Adults-with-Learning-Disabilities.pdf.
Starling S, Willis A, Dracup M, et al. Right to sight: accessing eye care for adults who are learning disabled. J Intellect Disabil. 2006;10:337–55. https://doi.org/10.1177/1744629506070057. [published Online First: 2006/11/16]
LOCSU. Eye care pathway for people with learning disabilities: service delivery proposal, 2020.
Zahidi AA, Vinuela-Navarro V, Woodhouse JM. Different visual development: norms for visual acuity in children with Down’s syndrome. Clin Exp Optom. 2018;101:535–40. https://doi.org/10.1111/cxo.12684. [published Online First: 2018/03/31]
Chokron S, Kovarski K, Zalla T, et al. The inter-relationships between cerebral visual impairment, autism and intellectual disability. Neurosci Biobehav Rev. 2020;114:201–10. https://doi.org/10.1016/j.neubiorev.2020.04.008
van Splunder J, Stilma JS, Bernsen RM, et al. Prevalence of visual impairment in adults with intellectual disabilities in the Netherlands: cross-sectional study. Eye. 2006;20:1004–10. https://doi.org/10.1038/sj.eye.6702059. [published Online First: 2005/09/09]
Van Splunder J, Stilma JS, Evenhuis HM. Visual performance in specific syndromes associated with intellectual disability. Eur J Ophthalmol. 2003;13:566–74. https://doi.org/10.1177/112067210301300610
Pilling RF, Outhwaite L. Are all children with visual impairment known to the eye clinic? Br J Ophthalmol. 2017;101:472–74. https://doi.org/10.1136/bjophthalmol-2016-308534. [published Online First: 2016/07/27]
Woodhouse JM, Davies N, McAvinchey A, et al. Ocular and visual status among children in special schools in Wales: the burden of unrecognised visual impairment. Arch Dis Child. 2014;99:500–4. https://doi.org/10.1136/archdischild-2013-304866. [published Online First: 2013/11/28]
Uzdrowska M, Woodhouse JM. Visual defects in special olympics participants from Europe. Clin J Sport Med. 2016;26:133–8. https://doi.org/10.1097/jsm.0000000000000204. [published Online First: 2015/07/21]
World Health Organisation. World Health Organisation Priority Eye Diseases [https://www.who.int/blindness/causes/priority/en/index4.html. Accessed 11 October 2020.
Pilling RF, Outhwaite L, Bruce A. Assessing visual function in children with complex disabilities: the Bradford visual function box. Br J Ophthalmol. 2016;100:1118–21. https://doi.org/10.1136/bjophthalmol-2015-307558. [published Online First: 2015/12/01]
Al-Bagdady M, Stewart RE, Watts P, et al. Bifocals and Down’s syndrome: correction or treatment? Ophthalmic Physiol Opt. 2009;29:416–21. https://doi.org/10.1111/j.1475-1313.2009.00646.x. [published Online First: 2009/05/28]
Anketell PM, Saunders KJ, Gallagher SM, et al. Accommodative function in individuals with autism spectrum disorder. Optom Vis Sci. 2018;95:193–201. https://doi.org/10.1097/OPX.0000000000001190
Doyle L, Saunders KJ, Little JA. Trying to see, failing to focus: near visual impairment in Down syndrome. Sci Rep. 2016;6:20444 https://doi.org/10.1038/srep20444. [published Online First: 2016/02/05]
Andersson S, Persson EK, Aring E, et al. Vision in children with hydrocephalus. Dev Med Child Neurol. 2006;48:836–41. https://doi.org/10.1017/S0012162206001794
Rostron E, Rawse C, Pilling RF. Validation of VSLD questionnaire in patients with learning disabilities undergoing cataract surgery. Eye. 2018; https://doi.org/10.1038/eye.2017.244.
LOCSU. Minor Eye Conditions Service (MECS) Pathway, 2016.
Little JA, Woodhouse JM, Saunders KJ. Corneal power and astigmatism in Down syndrome. Optom Vis Sci. 2009;86:748–54. https://doi.org/10.1097/OPX.0b013e3181a59d5d. [published Online First: 2009/04/25]
National Institute for Health and Care Excellence. Glaucoma: diagnosis and management NICE guideline [NG81 2017 [https://www.nice.org.uk/guidance/ng81.
Public Health England. Diabetic eye screening standards: Public Health England, 2020.
Pilling RF. Diabetic eye screening in people with learning disabilities: Improving access. J Diabetes Nurs. 2014;18:199–202.
Pilling R. Screening for diabetic retinopathy in adults with learning disability: current uptake and adjustments to facilitate equality of access. Br J Learn Disabil. 2014;43 [published Online First: https://doi.org/10.1111/bld.12088]
National Institute for Health and Care Excellence. Age-related macular degeneration NICE guideline [NG82], 2018.
Woodhouse JM, Griffiths C, Gedling A. The prevalence of ocular defects and the provision of eye care in adults with learning disabilities living in the community. Ophthalmic Physiol Opt. 2000;20:79–89. [published Online First: 2000/06/01]
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RFP conceived the premise for the paper. LD, MK and RFP developed the initial list of conditions. All authors contributed to the consensus statements. All authors read and approved the final manuscript.
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Conflict of interest
RFP—contributed to the development of the LOCSU pathway, co-creator Bradford Visual Function Box. LD—contributed to the development of the LOCSU pathway. MK—contributed to the development of the LOCSU pathway. GI—Director, Association of Optometrists; Director, Primary Ophthalmic Solutions. HB—none. RJL—none.
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Pilling, R.F., Donaldson, L., Karas, M. et al. Referral thresholds for an integrated learning disability eye care pathway: a consensus approach. Eye 36, 742–748 (2022). https://doi.org/10.1038/s41433-021-01516-y
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DOI: https://doi.org/10.1038/s41433-021-01516-y
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