Visual Impairment Scotland Research

Children with Visual Impairment:
The Time Course from Birth to Registration

Blaikie AJ, Ravenscroft J, Buultjens M, Dutton GN, Visual Impairment Scotland Research Group

Royal College of Ophthalmologists Congress
Birmingham, May 2003

Purpose

It is well recognised that in the management of children with visual impairment early coordinated multi-disciplinary intervention can lead to positive developmental and educational outcomes1,2.
Blind and partial sight registration is one formal means of communicating information from the eye department to community services about children with visual impairment. Concern has been highlighted in two recent Scottish Executive reports about the effectiveness and promptness of this notification system3,4.

The purpose of this study was to describe the time course from birth to blind or partial sight registration for a group of children with visual impairment.

Methods

The electronic database of Visual Impairment Scotland’s (VIS) childhood notification system5 was analysed. Complete information on four critical dates (as well as date of birth) in the diagnostic and registration process were available on 60 children registered blind and 49 registered partially sighted. The four dates included when:

• Parents first thought their child was visually impaired
• The condition causing visual impairment was diagnosed
• Visual impairment was confirmed
• Blind or partial sight registration occurred

Results

Number of children with complete information
436 children were notified to VIS between March 21 2001 and September 21 2002. 121 children were registered blind and 107 partially sighted. Complete information on the four critical dates in the diagnostic and registration process described above were available to VIS on 60 children registered blind and 49 registered partially sighted.

Time course from birth to registration in months
A summary of the average number of months from birth to the each of the four time points is described in figure 1 for both children registered blind as well as partially sighted

In children who were ultimately registered blind it took on average just over 7 months from birth for parents to suspect their child was visually impaired. It took a further 4 months to confirm that the child was visually impaired and then on average another 3 months to confirm the cause of the impairment. It then took on average 33 months for the child to be registered blind.

The time course for partial sight registration was similar but with the initial 3 time points all being between 1 and 2 years later. The eventual average time gap between confirmation of visual impairment and partial sight registration was similar to blind registration at 36 months.

Range of time gaps between first signs of visual impairment and registration
There was a large range of time gaps between when parents first suspected their child was visually impaired and when the child eventually became registered blind (Figure 2) or partially sighted (Figure 3).

Half of the children (30/60) were registered blind within 2 years of becoming symptomatic. However for over 25% (16/60) of the children blind registration took over 4 years to be performed and for a small group of children (4) it took over 14 years.

For partial sight registration there was a similarly large range of time gaps between initial symptoms of visual impairment and becoming registered partially sighted.

Half of the children (25/49) were registered by 4 years. There was however a small group of children (4) where it took over 10 years from initial symptoms of visual impairment to partial sight registration.

Conclusions

One of the functions of the official blind and partial sight register is to to notify community-based services of new presentations of children with visual impairment with the aim of initiating and coordinating an early and effective cross-discipline habilitation team.

This study highlights that although most children manifest visual impairment early in life many are registered several years after the onset of their visual impairment (if they become registered at all).

The effect of this delay of notification to community services is unknown although from the evidence currently available delay in receiving appropriate coordinated services is very likely to lead to adverse developmental, educational and visual function outcomes.

To overcome some of the limitations of the registration process it is recommended that each Health Board area identifies a community-based ‘lead clinician’ who coordinates the care of children with visual impairment. The role of the lead clinician would include developing a multi-agency community-based team6 to improve communication and sharing of information between the hospital and community as well as across different disciplines. This will allow the delivery of prompt multi-care packages despite the limitations of the registration system.

References:
1. Sonksen PM, Petrie A, Drew KJ. Promotion of visual development of severely visually impaired babies: evaluation of a developmentally based programme. Dev Med Child Neurol 1991 Apr;33(4):320-35
2. Wilkinson ME, Stewart IW, Trantham CS Iowa's pediatric low-vision services J Am Optom Assoc 2000 Jan;71(1):40-8
3. Social Work Inspectorate ‘Sensing Progress’, Social Work Services for People with a Sensory Impairment, The Scottish Office: September 1999
4. Certification and Registration Working Group, Social Work Services for People with a Sensory Impairment, The Scottish Office: May 2001
5. http://www.viscotland.org.uk/
6. A J Blaikie, M Campbell, G Coyle, E Lymburn, M Comerford, M Buultjens, GN Dutton Introduction of a multi-disciplinary community vision assessment team The 7th International Conference on Low Vision Activity and Participation July 2002, Göteborg, Sweden

John Ravenscroft
Manager
VI Scotland, SSC