Visual Impairment Scotland Research

Development of Childhood Visual Impairment Medical Registration Documents

AJ Blaikie, J Ravenscroft, GN Dutton

The 7th International Conference on Low Vision Activity and Participation
July 2002, Göteborg, Sweden

Purpose and Background

When a child is diagnosed with visual impairment only a minority of parents in the United Kingdom are ever offered written information to back up verbal information from the hospital consultation1,2. If information is provided it is often difficult to understand due to the use of too much jargon and an inappropriate reading age3,4. The purpose of this study was to develop relevant and understandable medical information documents that cover all causes of childhood visual impairment to meet the needs of parents, carers and children.

Methods

A medical information document was developed for every condition notified to the Visual Impairment Scotland(VIS) national childhood visual impairment epidemiology project.

Information for each document was found from reviewing the literature, reading relevant textbooks and searching the World Wide Web for currently existing documents. The documents were then written by AJB and GND using a staged process involving a multi-disciplinary group including professionals and parents.

After development of an initial batch of documents two comparative studies were performed to help further develop content and writing style:

A masked subjective parental feedback questionnaire study. This used three of the more common information documents and compared them to matched documents from two other national providers of medical information5,6.

An objective ‘SMOG’ reading age7 and ‘Flesch’ reading ease score8 study. This used ten matched medical information documents5.

Results

Number of information documents

Nearly 450 children with visual impairment have been notified to the VIS project resulting in the development of over 70 separate medical information documents. These documents cover over 95% of the causes of childhood visual impairment in a developed country9. Importantly for for the first time in the UK information documents are available that address cerebral visual impairment including cerebral palsy and periventricular leucomalacia.

Subjective Study

The subjective parent’s pilot found the VIS documents to be more relevant, understandable and readable than the equivalent matched documents.

Objective study

The average Flesch reading ease score of the VIS documents was 68% (range 52% to 80%). This was better than the average matched medical documents score of 40% (range 21% to 59%). A score of greater than 60% is said to represent plain English. None of the matched documents achieved this while 9 out of 10 of the VIS documents scored over 60%.

The average reading age of the VIS documents was 14.2 years (range 14 to 16). This was better than the average reading age of 18.5 (range 17 to 21) for the matched group.

Conclusions

A comprehensive, relevant and understandable resource of medical information documents has been developed driven by the needs of parents and the epidemiology of childhood visual impairment. The documents have high reading ease scores and low reading ages. This means that they are accessible to most adults and many children. They compare favourably to other information documents that are currently available.

References:
1. Walker E, Tobin M, Mc Kennel A. Blind and partially sighted children in Britain: the RNIB survey Vol2 London:HMSO1992,
2. ‘What families need now’ A report of the needs of families with visually impaired children in Scotland RNIB Publications (1996)
3. D'Alessandro DM, Kingsley P, Johnson-West J. The readability of pediatric patient education materials on the World Wide Web, Arch Pediatr Adolesc Med 2001 Jul;155(7):807-12
4. Graber MA, Roller CM, Kaeble B Readability levels of patient education material on the World Wide Web, J Fam Pract 1999 Jan;48(1):58-61
5. http://www.rnib.org.uk/info/welcome.htm
6. http://www.cafamily.org.uk/
7. McLaughlin, H., 'SMOG grading - a new readability formula', Journal of Reading, 1969, 22, 639-646
8. Rudolf Flesch (The Art of Readable Writing, Harper & Row, 1949),
9. Blohme J, Tornqvist K.Visual impairment in Swedish children. II. Etiological factors. Acta Ophthalmol Scand 1997 Apr;75(2):199-205

VI Scotland
Scottish Sensory Centre
Moray House School of Education
University of Edinburgh
Holyrood Road
Edinburgh
EH8 8AQ
Telephone: 0131 651 6078
Fax: 0131 6501 6502
E-mail: viscotland@ed.ac.uk
Web: www.viscotland.org.uk

John Ravenscroft
Manager
VI Scotland, SSC