Recording clinical data on a general database is not always the top priority in a busy practitioner’s long to-do list, with many unsurprisingly citing practical reasons as barriers to recording outcomes in this way [1]. The other side of the coin, though, is that much can be learned by analysing pooled outcome data.


The ultimate goal of gathering outcome data from individuals, is to improve patient care. However, having a standardised system to monitor outcomes can also facilitate broader service improvements such as the development and implementation of guidelines, improved teamwork, and the development of tools to support decision making [2].


Surely determining an individual person’s outcome after receiving rehabilitation is straight-forward? Unfortunately, the measurement of outcomes at the individual as well as group levels can become particularly complex in acquired brain injury rehabilitation. This is not only due to the heterogeneity of the condition, in terms of causes, severity and prognosis, but also due to variation in the procedures and benchmarking for measuring outcomes [3].


Since the foundation of Thomas Edward Mitton House in 1991, The Disabilities Trust’s first brain injury rehabilitation centre, we have adopted and have continuously been developing a standardised system for monitoring outcomes. Our approach to outcome measurement is inspired by the Traumatic Brain Injury Model Systems (TBMIS) in the USA. Our selection of measures is designed to match our approach to rehabilitation, which focuses on improving function and psychological adjustment to life after brain injury.


In the interests of transparency, these results are published every year in our Brain Injury Outcome Report. Our intention is to give the people we support, professionals, and anyone interested in brain injury in the wider community an understanding of the effects of brain injury, how rehabilitation works, and how it can improve people’s lives. In short, our Outcome Reports share and celebrate the achievements of those who spend time in our services.


Outcome data are an essential asset to better understanding the science of brain injury rehabilitation. Over the years, the use of outcome data within our services has enabled us to demonstrate the cost-effectiveness of post-acute brain injury rehabilitation, and to better understand some of the factors that influence outcome [4, 5]. Our outcome data have also helped us to develop ways of designing service streams specifically tailored to people’s rehabilitation needs [6]. In turn, this knowledge and understanding is expanded upon by the ongoing work of other national and international practitioners and researchers [7, 8, 9].


The science of outcome measurement is complex at both the individual and group levels. There are always areas for further improvement. Better data integration to enable us to develop an in-depth understanding of progress and challenges throughout a person’s journey being one of them… And we will keep striving for better, with our measures in hand to help.


The new edition of the Brain Injury Outcome Report is now available here


References
[1] Hatfield, D. R., & Ogles, B. M. (2004). The Use of Outcome Measures by Psychologists in Clinical Practice. Professional Psychology: Research and Practice, 35(5), 485–491. https://doi.org/10.1037/0735-7028.35.5.485


[2] Kampstra, N. A., Zipfel, N., van der Nat, P. B., Westert, G. P., van der Wees, P. J., & Groenewoud, A. S. (2018). Health outcomes measurement and organizational readiness support quality improvement: a systematic review. BMC Health Services Research, 18(1), 1-14.

[3] Maas, A. I. (2009). Standardisation of data collection in traumatic brain injury: key to the future?. Critical Care, 13(6), 1-2.


[4] Worthington, A. D., Matthews, S., Melia, Y., & Oddy, M. (2006). Cost-benefits associated with social outcome from neurobehavioural rehabilitation. Brain Injury, 20(9), 947–957.


[5] Oddy, M., & Ramos, S. D. S. (2013). The clinical and cost-benefits of investing in neurobehavioural rehabilitation: A multi-centre study.Brain Injury, 27(13–14), 1500–1507


[6] Copstick, S., & Ramos, S. D. S. (2019). Can cluster analysis help us better plan, communicate, and deliver brain injury rehabilitation? Brain Injury, 33, 203-204


[7] Alderman, N., Williams, C., & Wood, R. L. (2021). Using the St Andrew’s–Swansea Neurobehavioural Outcome Scale (SASNOS) to determine prevalence and predictors of neurobehavioural disability amongst survivors with traumatic brain injury in the community.Neuropsychological Rehabilitation, 1-28, https://doi.org/10.1080/09602011.2021.1946092


[8] Turner-Stokes, L., Dzingina, M., Shavelle, R., Bill, A., Williams, H., & Sephton, K. (2019). Estimated life-time savings in the cost of ongoing care following specialist rehabilitation for severe traumatic brain injury in the United Kingdom. The Journal Of Head Trauma Rehabilitation, 34(4), 205.


[9] Hammond, F. M., Malec, J. F., Corrigan, J. D., Whiteneck, G. G., Hart, T., Dams-O'Connor, K., ... & Ketchum, J. M. (2021). Patterns of functional change five to ten years after moderate-severe traumatic brain injury. Journal of Neurotrauma. https://doi.org/10.1089/neu.2020.7499