Review - Spinal Cord Injury
A Review of the Needs and Opportunites for the Surveillance of Spinal Cord Injury.
Executive Summary
Note:
So far, only this section of the document has been put into NISU's website. The text may mention
references, etc. which are in other sections of the document, and not on the web. If you are particularly
interested in seeing the full report, please send an email to
James Harrison.
Beginning in 1986, data on spinal cord injury was collected by
spinal units in New South Wales and registered using a system
devised by Mr. John Walsh an actuary. It later developed into
a national register and continued to operate until the end of
1991.
After the support of major funders concluded at the end of 1991,
the National Injury Surveillance Unit (NISU) commissioned a study
to investigate the demand for information on Spinal Cord Injury
(SCI) occurrence and ways in which it could be satisfied.
As the principal mode of inquiry, interviews were carried out
with a range of data users and unanimous support for a system
of State and National surveillance was found. There was wide agreement
on methods to be used for data collection.
This report makes the following recommendations.
That a register of incident cases be established, and that a uniform
core surveillance data set be agreed upon by spinal unit directors.
That collection and entry of core data items be incorporated into
the routine registration of cases by spinal units. The potential
for obtaining some of these data directly from other hospital
information systems should be investigated by spinal unit directors.
That NISU manage a central collection of core data, with appropriate
safeguards.
That NISU further prepare regular statistical summaries from a
national perspective and to provide an ad hoc information service.
Depending on the level of work involved a source of designated
on-going funding may be necessary.
In order for these recommendations to be implemented the report
further recommends that:
The need for special software to enable reporting within spinal
units and to NISU be considered with regard to specific functions
required, and funding to specify and develop this software should
be sought.
The form and content of feedback and reports to be provided by
NISU be considered in detail in consultation with spinal units.
A paper system of registration of incident cases be introduced
as soon as possible to recommence registration, pending development
of a computerised system.
Available evidence suggests that the population of people with
spinal injury is ageing rapidly, and may thus be developing special
needs for support and treatment. It is recommended that a register
of prevalent cases be established to investigate and monitor the
needs of this group. Steps to be taken in order to develop this
are:
- Establish a baseline register utilising existing SCI incident
cases on the SCI register (once it is developed) and those cases
of SCI readmitted to hospital and identified as unregistered SCIs.
- Monitor incident cases through the incidence register.
- Monitor deaths through the use of National Deaths Index
Acknowledgments
The most important part of this report derives from the expertise
of those interested in the occurrence and sequelae of spinal cord
injury. I would therefore like to thank the directors of the six
Australian spinal units and other individuals who have participated
in the review.
A number of people have assisted in the production of this report
which was funded by the National Injury Surveillance Unit. I would
like especially to thank the author Mr Charles Blumer of the Department
of Public Health, University of Sydney, who, together with the
assistance of Dr S. Quine and Dr D. Lyle, planned and wrote this
report. I would also like to thank NISU staff Mr Peter O'Connor
and Dr Raymond Cripps for their editorial assistance and final
production work on the report.
|