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      Cohort profile: the Acquired Brain Injury Community REhabilitation and Support Services OuTcomes CohoRT (ABI-RESTaRT), Western Australia, 1991–2020

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          Abstract

          Purpose

          Transition back into the community following acute management of acquired brain injury (ABI) is a critical part of recovery. Post-acute rehabilitation and transitional care can significantly improve outcomes. The Acquired Brain Injury Community REhabilitation and Support Services OuTcomes CohoRT (ABI-RESTaRT) is a novel whole-population cohort formed to better understand the needs of individuals with ABI receiving post-acute rehabilitation and disability services in Western Australia (WA), and to improve their outcomes. To do this a unique combination of (1) internal clinical/rehabilitation data, and (2) externally linked health data from the WA Data Linkage System was used, including hospitalisations, emergency department presentations, mental health service use and death records, to measure longitudinal needs and outcomes of individuals with ABI over 29 years, making this the largest, most diverse post-acute ABI cohort in Australia to date.

          Participants

          Whole-population cohort of individuals (n=1011) with an ABI who received post-acute community-based neurorehabilitation or disability support services through Brightwater Care Group from 1991 to 2020.

          Findings to date

          Comprehensive baseline demographic, clinical and rehabilitation data, outcome measures and linked health data have been collected and analysed. Non-traumatic brain injury (eg, stroke, hypoxia) was the main diagnostic group (54.9%, n=555), followed by traumatic brain injury (34.9%, n=353) and eligible neurological conditions (10.2%, n=103). Mean age at admission was 45.4 years, and 67.5% were men (n=682). The cohort demonstrated significant heterogeneity, socially and clinically, with differences between ABI groups across a number of domains.

          Future plans

          ABI-RESTaRT is a dynamic whole-population cohort that will be updated over time as individuals enrol in the service. Future analyses will assess longitudinal brain injury outcomes, the changing health and social needs of individuals with ABI and evaluate and inform post-acute services to best support these individuals.

          Registration

          This cohort is not linked to a clinical trial, and is not registered.

          Related collections

          Most cited references46

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          The minimally conscious state: definition and diagnostic criteria.

          J.T. Giacino, S Ashwal, N Childs … (2002)
          To establish consensus recommendations among health care specialties for defining and establishing diagnostic criteria for the minimally conscious state (MCS). There is a subgroup of patients with severe alteration in consciousness who do not meet diagnostic criteria for coma or the vegetative state (VS). These patients demonstrate inconsistent but discernible evidence of consciousness. It is important to distinguish patients in MCS from those in coma and VS because preliminary findings suggest that there are meaningful differences in outcome. An evidence-based literature review of disorders of consciousness was completed to define MCS, develop diagnostic criteria for entry into MCS, and identify markers for emergence to higher levels of cognitive function. There were insufficient data to establish evidence-based guidelines for diagnosis, prognosis, and management of MCS. Therefore, a consensus-based case definition with behaviorally referenced diagnostic criteria was formulated to facilitate future empirical investigation. MCS is characterized by inconsistent but clearly discernible behavioral evidence of consciousness and can be distinguished from coma and VS by documenting the presence of specific behavioral features not found in either of these conditions. Patients may evolve to MCS from coma or VS after acute brain injury. MCS may also result from degenerative or congenital nervous system disorders. This condition is often transient but may also exist as a permanent outcome. Defining MCS should promote further research on its epidemiology, neuropathology, natural history, and management.
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            Goal attainment scaling: A general method for evaluating comprehensive community mental health programs.

            T J Kiresuk, Vincent Sherman (1968)
            A mental health enterprise may be described by either (a) rather general philosophical total mental health goals, or (b) highly diverse and individualized patient-therapist goals. Goals a. have not provided a workable framework for program evaluation. This paper proposes that evaluation be done in the framework of goals b. by setting up, before treatment, a measurable scale for each patient-therapist goal, and specifying, for each patient, a transformation of his overall goal attainment into a standardized T-score. This method, together with random assignment of patients to treatment modes, was devised to permit comparison of treatment modes within a program, but it also provides a good basis for a judgmental evaluation of the total program.
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              Organised inpatient (stroke unit) care for stroke: network meta-analysis

              Peter Langhorne, Samantha Ramachandra (2020)
              Organised inpatient (stroke unit) care is provided by multi-disciplinary teams that manage stroke patients. This can been provided in a ward dedicated to stroke patients (stroke ward), with a peripatetic stroke team (mobile stroke team), or within a generic disability service (mixed rehabilitation ward). Team members aim to provide co-ordinated multi-disciplinary care using standard approaches to manage common post-stroke problems.
              Article 0 comments Cited 92 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (nlm-ta): BMJ Open
                Journal ID (iso-abbrev): BMJ Open
                Journal ID (hwp): bmjopen
                Journal ID (publisher-id): bmjopen
                Title: BMJ Open
                Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                ISSN (Electronic): 2044-6055
                Publication date Collection: 2021
                Publication date (Electronic): 2 September 2021
                Volume: 11
                Issue: 9
                Electronic Location Identifier: e052728
                Affiliations
                [1 ]departmentBrightwater Research Centre , Brightwater Care Group , Osborne Park, Western Australia, Australia
                [2 ]departmentDisability Services , Brightwater Care Group , Osborne Park, Western Australia, Australia
                [3 ]departmentSchool of Social Sciences , The University of Western Australia , Crawley, Western Australia, Australia
                Author notes
                [Correspondence to ] Dr Georgina Mann; georgina.mann@ 123456brightwatergroup.com
                Author information
                http://orcid.org/0000-0003-3950-4989
                http://orcid.org/0000-0001-5408-8747
                http://orcid.org/0000-0003-1886-7115
                Article
                Publisher ID: bmjopen-2021-052728
                DOI: 10.1136/bmjopen-2021-052728
                PMC ID: 8413932
                PubMed ID: 34475189
                SO-VID: 29d2c3d9-2b94-4d21-afed-5f1ded317f7a
                Copyright © © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
                License:

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/.

                History
                Date received : 24 April 2021
                Date accepted : 06 July 2021
                Categories
                Subject: Neurology
                Subject: 1506
                Subject: 1713
                Series title: Cohort profile
                Custom metadata
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                ScienceOpen disciplines: Medicine
                Keywords: rehabilitation medicine,stroke,neurological injury
                Data availability:
                ScienceOpen disciplines: Medicine
                Keywords: rehabilitation medicine, stroke, neurological injury

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