The success of traumatic brain injury registry outreach

Abstract

Background: Traumatic brain injury (TBI) affects a large percentage of the US population. Survivors are under-served and recognized. The current mechanisms to contact patients and provide access to needed services appear ineffective.

Objective: To review the effectiveness of current TBI outreach using registries.

Methods: This study reviewed practices of the local TBI programme containing a registry utilized for outreach. Then, using a standardized questionnaire focusing on the TBI registry structure and its follow-up techniques, self-proclaimed registries were contacted and compared across the nation.

Results: Twelve additional TBI programmes were contacted. Eight others had actual registries used for follow-up. The principal mechanism was postal mail. Mail response rates varied from 0.54–25%. Programmes were limited by funding, staffing and access to contact information.

Conclusion: Postal mail has not been a successful follow-up method for TBI registries. New structuring of letters and alternative contact techniques are needed. Improved access to those individuals with TBI’s contact information and funding would likely also aid programmes managing this public health epidemic.

• Public health communication
• social media
• traumatic brain injury

Acknowledgements

We would like to thank all the many individuals in the TBI programmes who answered the email questionnaires and helped compile data for this project.