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«The Royal College of Ophthalmologists Ophthalmic Services Guidance OPHTHALMIC SERVICES FOR CHILDREN 1. Background This document summarises the views ...»

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The Royal College of Ophthalmologists

Ophthalmic Services Guidance

OPHTHALMIC SERVICES FOR CHILDREN

1. Background

This document summarises the views of the Paediatric Subcommittee of the Royal

College of Ophthalmologists regarding best practice and minimum standards in

relation to health services for children with ophthalmic disorders, in keeping with the

RCOphth’s Quality Standards / Indicators for Paediatric Ophthalmology.

(http://www.rcophth.ac.uk/page.asp?section=444§ionTitle=Quality+Standards) Ophthalmic disorders, as defined here, include eye disease, disorders of cerebral function affecting vision, and visual impairment. The Committee endorses the standards laid out in the National Service Framework for Children, Young People and Maternity Services: Change for Children – Every Child Matters 1 and in ‘Healthy lives, Brighter futures’ (http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAn dGuidance/DH_094400) The term children is used in this document to refer to individuals less than 12 years of age, and young people to refer to individuals between 12 and 16 years of age.

Despite the upcoming substantial changes in health service provision in the UK, the

purpose of ophthalmic health services for children remains:

1. Primary prevention:

Preventing the occurrence of visually impairing disease through effective screening and treatment - e.g. screening of premature neonates for retinopathy of prematurity Author: Mike Clarke on behalf of the Paediatric Subcommittee 2012/PROF/182 Reviewed: August 2012 Chris Lloyd, Jane Leitch, Jugnoo Rahi of the Paediatric Sub-committee © The Royal College of Ophthalmologists 2012 All rights reserved For permission to reproduce any of the content contained herein please contact beth.barnes@rcophth.ac.uk The Royal College of Ophthalmologists Ophthalmic Services Guidance

2. Secondary prevention:

Reducing the visual impact of established disease - e.g. screening for vision impairment in 4-5 year old children followed by appropriate treatment

3. Tertiary prevention Maximising function in individuals with permanent visual impairment - e.g.

provision of low vision aids for children with congenital eye anomalies or habilitation/rehabilitation programmes.

2. Introduction Consideration of the effects of ophthalmic disorders, and their treatment, on the child’s general development and quality of life should be paramount. To deliver high quality services, it is essential to address the specific needs of children with ophthalmic disorders as well the needs of their families. The following issues shape

these needs, which differ from those of adults:

A child’s health encompasses their physical, emotional and social development.

Visual loss in childhood can significantly impair progress in any of these dimensions 2. Equally, developmental delay will impact on a child’s functional vision.

Paediatric ophthalmic disorders and their management should be viewed in the broader context of general health and development – services should be childcentred.

Effective partnership between children/young people, their parents and health professionals is central to the successful management of all children with ophthalmic disorders, with, in many situations, the parents implementing the treatment, for example administration of eye drops or carrying out occlusion for amblyopia. The configuration and content of ophthalmic services should reflect the central role of individual parents (with their specific circumstances) in clinical-decision making.

Author: Mike Clarke on behalf of the Paediatric Subcommittee 2012/PROF/182 Reviewed: August 2012 Chris Lloyd, Jane Leitch, Jugnoo Rahi of the Paediatric Sub-committee © The Royal College of Ophthalmologists 2012 All rights reserved For permission to reproduce any of the content contained herein please contact beth.barnes@rcophth.ac.uk The Royal College of Ophthalmologists

Ophthalmic Services Guidance

Effective partnership depends on clear communication between parents, children and professionals. Health professionals should ensure that information about a child’s ophthalmic disorder is presented in an understandable way and is supplemented by written information, including copies of clinic letters, where appropriate. Health professionals should communicate with each other and with education and social care professionals, as appropriate, to ensure the needs of the child are met.

Parents are usually effective as expert advocates for their children, although they may be constrained by their socio-economic, demographic or other personal circumstances 3. Parental advocacy should be supported and encouraged through provision of information and social and emotional support, both in the context of the management of individual children as well as more broadly in relation to the planning of ophthalmic services for children with visual impairment 4.

The majority of children in the UK with severe visual impairment/blindness (determined as corrected acuity worse than 6/60 or 1.1 LogMAR or worse 5) have additional and often multiple serious motor, sensory or learning impairments and/or serious chronic diseases 6. The needs of children with ophthalmic disorders vary substantially according to whether these are isolated or part of a complex of other impairments or diseases, as well by the level of visual loss experienced.





Many children with ophthalmic disorders and all with visual impairment (isolated or otherwise) will be under the concurrent care of a range of health, education and social care professionals. Good communication and liaison between the different professionals and agencies involved is the key to delivering comprehensive and coordinated care. A multi-disciplinary team approach to achieving this could include the use of ECLOs (Eye Clinic Liaison Officers) and the development of a pathway incorporating a “first point of contact” clinician for children’s eye services. A typical Author: Mike Clarke on behalf of the Paediatric Subcommittee 2012/PROF/182 Reviewed: August 2012 Chris Lloyd, Jane Leitch, Jugnoo Rahi of the Paediatric Sub-committee © The Royal College of Ophthalmologists 2012 All rights reserved For permission to reproduce any of the content contained herein please contact beth.barnes@rcophth.ac.uk The Royal College of Ophthalmologists

–  –  –

ECLO works with staff in the eye clinic and provides a link to the sensory team in social services. They provide support and information to children and families to aid in understanding and coping with the impact of an ophthalmic condition and any associated sight loss15.

All such multi-disciplinary teams should closely communicate with sensory support services 7 and provide information about local and national support services and support groups.

Serious visual loss in childhood is uncommon. 6 of every 10,000 children born in th the UK each year become severely visual impaired or blind by their 16 birthday and approximately a further 12 become visually impaired (worse than 6/18 or 0.5 to 1.0 Log MAR). Thus there are at least 4 newly visually impaired children each day in the UK and around 2 per 1000 children in a given population are visually impaired or blind 8. Children with milder visual loss, unilateral visual problems or eye disease without visual consequences considerably outnumber others within paediatric ophthalmic services and require a disproportionately smaller amount of available resources in the long-term than the minority with visual impairment. The planning of ophthalmic services should explicitly account for the three different ‘populations’ of children they serve: that with visual impairment as an isolated problem, that with visual impairment as well as other impairments/disorders and that with mild or no visual loss.

Health services for children with ophthalmic disorders should uphold the principles and standards of care established by the UK’s National Service Framework for Children. A ‘needs based’ approach, especially in relation to disability, which takes into account personal differences (including those arising from socio-economic and Author: Mike Clarke on behalf of the Paediatric Subcommittee 2012/PROF/182 Reviewed: August 2012 Chris Lloyd, Jane Leitch, Jugnoo Rahi of the Paediatric Sub-committee © The Royal College of Ophthalmologists 2012 All rights reserved For permission to reproduce any of the content contained herein please contact beth.barnes@rcophth.ac.uk The Royal College of Ophthalmologists

–  –  –

demographic characteristics) and places the child and the family at the core, should be the paradigm for ophthalmic services for children.

3. Primary Prevention (NSF standard 1: Promoting Health and Wellbeing, Identifying Needs and Intervening Early) The College endorses the recommendations of the fourth edition of “Health for all children” issued in 2003 and subsequently in the Child Health Promotion Programme and the Healthy Child Programme (http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAn dGuidance/DH_107563) regarding screening, in order to promote early detection 10 of ophthalmic disorders or reduced vision. Parents should be aware that their child is entitled to a free NHS eye examination up to the age of 16 (19 if in full time education) by community optometrists.

3.1 Neonatal examination The external eyes should be examined and the presence of a red reflex in each eye established by a suitably trained health professional. The parents should be asked if there is a family history of visual disorders – particularly retinoblastoma or congenital cataract. Parents should be asked soon after birth and at each subsequent contact whether they have any anxieties about the baby’s vision. Concerns arising as a result of these procedures should prompt urgent referral to hospital ophthalmic services.

3.2 Screening at age 4 - 5 years:

A visual assessment by an orthoptist should be carried out on all children between the ages of 4 and 5 years. In areas where this is not possible, children should be screened at school entry as part of a programme supervised by an orthoptist. This position is also endorsed by the UK Vision Strategy Screening Action Group.

Author: Mike Clarke on behalf of the Paediatric Subcommittee 2012/PROF/182 Reviewed: August 2012 Chris Lloyd, Jane Leitch, Jugnoo Rahi of the Paediatric Sub-committee © The Royal College of Ophthalmologists 2012 All rights reserved For permission to reproduce any of the content contained herein please contact beth.barnes@rcophth.ac.uk The Royal College of Ophthalmologists

–  –  –

Screening at 4 to 5 years is primarily concerned with detecting unsuspected visual impairment in one or both eyes. Visual acuity should be tested using a logMAR system to allow statistical analysis and comparison with other studies and programmes.

The gold standard for visual acuity estimation is an age appropriate linear logMAR test. This allows statistical analysis and comparison with age related norms.

Children who achieve less than 0.2 LogMAR (6/9.5 Snellen) in either eye, despite good co-operation should be referred.

Feedback on referral outcomes must be sent to the referrer and to the general practitioner. A summary of management should be sent to the general practitioner at the time of discharge.

The service should be subject to regular audit.

3.3 Screening at other ages:

The benefits of screening at other ages - e.g. at 11 – 14 years for myopia, other visual acuity defects and colour vision impairments, are unresolved, and we do not recommend any change to current local arrangements.

3.4 Secondary screening Secondary screening refers to the assessment of a child with a suspected ophthalmic disorder by a community based professional e.g. orthoptist or optometrist with a view to reducing rates of hospital attendance and providing treatment, where necessary, closer to home.

3.5 High Risk Groups

Author: Mike Clarke on behalf of the Paediatric Subcommittee 2012/PROF/182 Reviewed: August 2012 Chris Lloyd, Jane Leitch, Jugnoo Rahi of the Paediatric Sub-committee © The Royal College of Ophthalmologists 2012 All rights reserved For permission to reproduce any of the content contained herein please contact beth.barnes@rcophth.ac.uk The Royal College of Ophthalmologists

–  –  –

Targeted clinical surveillance of certain groups at high risk of an ophthalmic disorder is recommended (incorporating a full orthoptic examination, cycloplegic refraction and fundus examination).

These groups include children with:

• Sensorineural hearing impairment

• Neurodevelopmental impairments inc Downs syndrome

• A family history of a childhood onset ophthalmic disorder e.g. retinoblastoma Where appropriate, these examinations should be performed in community settings.

4. Children and Young People in Hospital (NSF standard 7)

4.1 General A senior member of staff in each eye unit should be designated the lead for children’s ophthalmic services.

Children, young people and their parents should be actively involved in decisions about the child’s health and wellbeing, based on appropriate information.

Confidentiality and consent policies should be developed and made explicit to children, young people and their parents.

Every ophthalmic unit should have recognised emergency cover arrangements and access to paediatric advice and facilities.

A senior member of staff should have designated responsibility for screening for retinopathy of prematurity and ensuring arrangements are in place to cover periods of leave.

Author: Mike Clarke on behalf of the Paediatric Subcommittee 2012/PROF/182 Reviewed: August 2012 Chris Lloyd, Jane Leitch, Jugnoo Rahi of the Paediatric Sub-committee © The Royal College of Ophthalmologists 2012 All rights reserved For permission to reproduce any of the content contained herein please contact beth.barnes@rcophth.ac.uk The Royal College of Ophthalmologists

Ophthalmic Services Guidance



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