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The Role of Trauma Registries in the Development of Guidelines: A European Perspective

Manchester 6th November 2002


Proceedings from Discussion Groups
Raporteurs: Claus Falk Larsen & Murray Mackay



Should we have a European Trauma Registry?

All delegates agreed to the aspirational principle of a European Trauma Registry but tempered with an evolutionary approach.
It was suggested that the Registry would be used to propagate best practice in quality of care, epidemiological research and prevention of injury.Aims and objectives should be clearly stated. Quality and validated data is central.
 

Those with ‘working databases’ should be encouraged now to compare processes of care and outcomes.

Inclusion Criteria?
It was noted that there are differences in inclusion criteria throughout Europe.
A population overview would be most beneficial nevertheless well defined subgroups are essential. These would include pre-hospital deaths, different groups of patients dependent on ISS or Length of Stay or mechanism and intent or if Trauma Teams are / are not present. If organised in modules (current criteria) comparative work may be undertaken.

Exclusions?
It was concluded that this may be a capacity question and therefore there should be an ALL inclusive criteria with different modules attached.

Scoring Systems
AIS should be the base standard and an electronic version on Registries is essential.
Elaine Wodzin agreed to discuss this issue with AAAM at a meeting week beginning 11th November. It is essential that injury descriptions are retained on a Registry not just the AIS codes.

Absolute physiological recordings are also essential and not merely the TRISS codes.

ISS and NISS require more research and validation and the statisticians agreed that there was not much advantage in the use of NISS over ISS when evaluating population comparisons. Agreement that all coding should be carried out by trained and qualified coders with access to clinical support.
ASCOT was not discussed at this time.

Outcomes?
30 day length of stay or discharge was agreed.
Disability assessments are necessary but require discussions and will be resource dependant. A combination of detailed (POLO*), ‘easier to collect’ (EQ5D) and the Functional Capacity Index (to be used in future AIS Dictionaries) may be required. A validation site for the Functional Capacity Index in Europe may also be required. The overall aim should be for a generic and specific health status instrument.

* The POLO Chart consists of Glasgow Outcome Scale, patient interviews SF36, self reporting Euroquol and a validation study which has been done two years after injury.
The proceedings of the European conference on disability are reported in the Journal of
Restorative Neurology and Neuroscience 2002

Should we have performance measures?
Agreed in principle. Correct application is essential and it would appear that Registries do vary. There would be consequences on the logistic regression coefficients and models.TRISS to be used in the interim but research into improvements are required.

Infrastructure
In the absence of funding, a Virtual Registry was suggested.
Each country to have a ‘Centre’ that would liase internationally.
Should be a minimum dataset and agreements would be required.

Security / Confidentiality / Ethics
Anonymised data.An objective system involving other organisations should act on poor performance.

Sources of Funding?
It was thought that a Core Dataset would strengthen any bids for funding.

Timetable for moving forward?
ACTION:
- TARN will set up an Internet Communication Area: 9th December

- The details of the European Group will be posted on the Internet Area: 20th December

- The Aims and Objectives (Mission Statement) of the European Group to be ‘posted’ on the Internet Area. Should include short term, medium term and long term goals. All members of the group will be notified of the internet address by e-mail: 20th December

- Agreement on a minimum dataset through a DELPHI process using an Internet based discussion. 31st March

- Review and include the European Emergency Medicine and Public Health groups

Designed by The Trauma Audit & Research Network