Background: Traumatic brain injury (TBI) is a leading cause of death and disability worldwide. In Ireland, a dearth of research on TBI means that we neither know the number of people affected by this injury, nor have the information required to improve neuro-rehabilitation services. Aims: This is the protocol for a study that will examine pathways through rehabilitation for survivors of TBI in the Republic of Ireland. The experiences of family members providing care or support to a person with TBI will also be explored. Additionally, the study will estimate the incidence and prevalence of TBI in Ireland. Epidemiological data and information on how people with TBI access rehabilitation and health services will support advocacy efforts towards the redevelopment of neuro-rehabilitation services. Methods: The research is a mixed method, observational cohort study design. Participants with moderate to severe TBI will be recruited through two brain injury service providers, two acute hospitals that provide neurosurgical services, and the National Rehabilitation Hospital. Questionnaires will be administered to participants with TBI on two separate occasions, six months apart, and to family members providing care or support to an individual with TBI, on one occasion. Data from the medical records of participants will be abstracted to capture key information about their brain injury. TBI survivor participants’ use of health care will be followed prospectively for six months.  Expected outcomes: The study will outline participants’ pathways through rehabilitation in Ireland, to understand how rehabilitation services are accessed, and the barriers to accessing these services. The incidence and prevalence of TBI in Ireland will be estimated. Experiences of family members providing care or support to an individual with TBI will be   detailed. The outcomes of the study will support ongoing efforts to improve care for TBI survivors in Ireland and to redevelop neuro-rehabilitation services.

Background Traumatic brain injury (TBI) is a leading cause of death and disability worldwide. Much work on the epidemiology of TBI uses routinely collected health care data. There is no separate code for TBI in ICD-10, a common coding system for acute care. One reason for reported variations in TBI prevalence between countries is differences in the identification of TBI from routine data. This study assessed the performance of an Australian classification system (Pozzatto et al 2019), using a standardised approach to ICD-10 codes to identify cases of likely TBI in routine hospital discharge data. Methods The original study was done on hospital data from New South Wales. We replicated their approach using Irish hospital data, held by Health Intelligence, from 2013 to 2020. Cases not classified as TBI by this system, but with codes, such as loss-of-consciousness, skull fracture or intra-cranial injury were manually reviewed. Results All 98,419 discharges with any code in S00 to S99 were reviewed. 27,851 (28.3%) had a skull fracture or intracranial injury. 12,106 (12.3%) had loss-of-consciousness and/or post-traumatic amnesia. 11,976 (98.9%) of these (12.2% of the total) had either a skull fracture or an intra-cranial injury reported. 26,085 (26.5%) of the original 98,419 cases were classified as TBI using the NSW classification. Manual review of 1.3% (1,356) cases added a maximum of 0.32% (321) further possible cases of TBI, suggesting a sensitivity of the classification of 98.8% (95% CI 98.6% - 98.9%). Discussion The main limitation is that it is not possible to identify false positive cases - those coded as TBI, but where no TBI was present. This approach to identifying TBI works well, and is feasible for wider implementation. It provides comparability between different studies. Pozzato I et al. (2019), Epidemiology of hospitalised traumatic brain injury in the state of New South Wales, Australia: a population-based study. Australian and New Zealand Journal of Public Health. 2019 Key messages There are problems comparing data on TBI between different countries because no single code for TBI exists in ICD-10, and this is a real challenge for epidemiologists and health services researchers. The use of an agreed system, developed in Australia, for recoding injury data to identify TBI has promise, and shows excellent sensitivity in two countries.

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Background: Traumatic brain injury (TBI) is a leading cause of death and disability worldwide. In Ireland, a dearth of research means that we neither know the number of people affected by TBI, nor have the required data to improve neuro-rehabilitation services. This is a study protocol to examine the epidemiology and pathways through rehabilitation for a cohort of TBI survivors in the Republic of Ireland. Aims:  To document the epidemiological data of TBIs in Ireland.To explore the pathway of TBI survivors through rehabilitation/health services.To document the experiences of those providing care for TBI survivors in Ireland  Methods: This is a quantitative cohort study. Existing routine datasets will be used to report epidemiological data. Participants with moderate or severe TBI will be recruited through two brain injury service providers, two acute hospitals that provide neurosurgical services, and the National Rehabilitation Hospital. Participants with TBI will be surveyed on two separate occasions, to explore their use of health and rehabilitation services. Those providing care or support to TBI survivors will be surveyed, on one occasion. Additionally, data from the medical records of TBI survivors will be abstracted to capture key information about their TBI, such as mechanism of injury, severity, hospitalisation and follow-up. TBI survivors’ use of health care will be followed prospectively for six months.  Expected outcomes: The epidemiological data of TBI in Ireland will be documented. Data on survivors’ experiences of how rehabilitation services are accessed, and any barriers encountered with rehabilitation/health services will be reported. The experiences of those providing care or support for TBI survivors will be captured. It is expected that the outcomes of the study will support advocacy efforts toward the redevelopment of neuro-rehabilitation services in the Republic of Ireland.

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