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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset
Brain Injury Rehabilitation
Minimum Dataset Data Dictionary
NSW Brain Injury Rehabilitation Directorate
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset i
AGENCY FOR CLINICAL INNOVATION
Level 4, 67 Albert Avenue
Chatswood NSW 2067
PO Box 699 Chatswood NSW 2057
T +61 2 9464 4666 | F +61 2 9464 4728
E [email protected] | www.aci.health.nsw.gov.au
SHPN (ACI) 190386, ISBN 978-1-76081-214-0.
Produced by: Brain Injury Rehabilitation Directorate, Agency for Clinical Innovation.
Further copies of this publication can be obtained from
the Agency for Clinical Innovation website at www.aci.health.nsw.gov.au
Disclaimer: Content within this publication was accurate at the time of publication. This work is copyright. It may be
reproduced in whole or part for study or training purposes subject to the inclusion of an acknowledgment of the source.
It may not be reproduced for commercial usage or sale. Reproduction for purposes other than those indicated above,
requires written permission from the Agency for Clinical Innovation.
Version: 3.0 Trim: ACI/D19/3082
Date Amended: July 2019
© Agency for Clinical Innovation 2019
The Agency for Clinical Innovation (ACI) works with clinicians, consumers and managers to design and
promote better healthcare for NSW. It does this by:
service redesign and evaluation – applying redesign methodology to assist healthcare providers and
consumers to review and improve the quality, effectiveness and efficiency
of services
specialist advice on healthcare innovation – advising on the development, evaluation and adoption of
healthcare innovations from optimal use through to disinvestment
initiatives including guidelines and models of care – developing a range of evidence-based healthcare
improvement initiatives to benefit the NSW health system
implementation support – working with ACI Networks, consumers and healthcare providers to assist
delivery of healthcare innovations into practice across metropolitan and rural NSW
knowledge sharing – partnering with healthcare providers to support collaboration, learning capability
and knowledge sharing on healthcare innovation and improvement
continuous capability building – working with healthcare providers to build capability
in redesign, project management and change management through the Centre for Healthcare
Redesign.
ACI Clinical Networks, Taskforces and Institutes provide a unique forum for people to collaborate across
clinical specialties and regional and service boundaries to develop successful healthcare innovations.
A priority for the ACI is identifying unwarranted variation in clinical practice and working in partnership
with healthcare providers to develop mechanisms to improve clinical practice
and patient care.
www.aci.health.nsw.gov.au
file:///C:/Users/accounts/AppData/Roaming/Microsoft/Word/www.aci.health.nsw.gov.auhttp://www.aci.health.nsw.gov.au/
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset ii
Acknowledgements
The NSW Brain Injury Rehabilitation Directorate (BIRD) wishes to acknowledge the members of
the NSW BIRD Data and Information Management Committee for their contribution to the
development of the BIRD Minimum Dataset (MDS) Data Dictionary V3.0, and for guiding and
supporting the data management processes and practises of the BIRD network.
Further thanks are extended to previous BIRD data and information managers and committee
members for their valued work and contribution to previous versions of the BIRD MDS Data
Dictionary.
Finally, thanks are given to the dedicated staff of the NSW Brain Injury Rehabilitation Programs
(BIRPs) for their continued commitment to the implementation and collection of the BIRD MDS.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset iii
Abbreviations
ABI Acquired brain injury
ACI Agency for Clinical Innovation
ABS Australian Bureau of Statistics
BIRD Brain Injury Rehabilitation Directorate
BIRP Brain Injury Rehabilitation Program
BIRS Brain Injury Rehabilitation Service
BIRT Brain Injury Rehabilitation Team
BIRU Brain Injury Rehabilitation Unit
BIS Brain Injury Service
CDS Clinical dataset
EOC Episode of care
FIM Functional independence measure
GCS Glasgow coma scale
NDIA National Disability Insurance Agency
NDIS National Disability Insurance Scheme
NEC Not elsewhere classified
MDS Minimum dataset
MPAI-4 Mayo-Portland Adaptability Inventory - 4
MVA Motor vehicle accident
Non-TBI Non-traumatic brain injury
PROMIS-29 Patient Reported Outcomes Measurement Information System - 29
PTA Posttraumatic amnesia
SCHN Sydney Children’s Hospital Network
SOC Setting of care
TBI Traumatic brain injury
TLP Transitional living program
TLU Transitional living unit
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset iv
Glossary
Acquired brain injury Acquired brain injury is an injury to the brain, which results in
deterioration in cognitive, physical, emotional and/or independent
functioning. Acquired brain injury can occur as a result of trauma,
hypoxia, infection, substance abuse, degenerative neurological
diseases or stroke.
Admission The process whereby a BIRS accepts responsibility for the patient's care and/or treatment. Admission follows a clinical decision based upon specified criteria in line with the BIRS service’s intake criteria.
Active or current client Clients within a BIRP service who have an episode of care (EOC) which hasn’t ended.
Client A client is a person for whom a healthcare provider accepts
responsibility for assessment and/or treatment. Used
interchangeably with ‘consumer’, ‘person’ and ‘patient’ throughout
this document.
Episode of care An EOC is a period of contact between a client and the BIRP service that occurs in one setting of care and in which there is no major change in the goal of intervention
Glasgow Coma Scale The Glasgow Coma Scale is a widely used method for assessing
the level of consciousness and initial injury severity of a brain injury.
New client An individual presenting him/herself to a BIRP service unit for any form of intervention. These would be ‘new admission’ clients with no previous records of an EOC at that particular BIRP.
Non-traumatic brain injury Non-traumatic brain injury is caused by internal events such as a
stroke, lack of oxygen to the brain resulting from ruptured or blocked
blood vessels in the brain, brain tumours, poisoning or infections.
Post-traumatic Amnesia Post-traumatic amnesia) is the state of confusion experienced post
traumatic brain injury which can result in temporary amnesia and
disorientation. Duration of post-traumatic amnesia is widely
acknowledged to be the best predictor of outcome and is used to
measure injury severity in the NSW BIRPs.
Referral Recommendation for transfer of client from a referring agency to a BIRP service, regardless of whether or not they meet the intake criteria and are accepted into the service.
Setting of care The different care settings determining the type of rehabilitation services the client will receive once admitted to the BIRP. The settings of care for the BIRP are: adult inpatient, adult community (including non-inpatient, outreach and rehabilitation), adult transitional living program or unit, paediatric inpatient and paediatric outpatient (community including non-inpatient and outreach).
Transfer The movement of a client from one setting of care to another within a BIRP service.
Traumatic brain injury A traumatic brain injury is an acquired brain injury occurring as a
result of external force to the brain that occurs after birth, impacting
on brain function and development.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset v
Contents
Acknowledgements ...................................................................................................................... ii
Abbreviations ............................................................................................................................... iii
Glossary ....................................................................................................................................... iv
Contents ........................................................................................................................................ v
Background ................................................................................................................................... 1
Introduction ................................................................................................................................... 2
The Brain Injury Rehabilitation Program ................................................................................. 2
Table 1. Brain Injury Rehabilitation Programs and their settings of care ....................... 2
Brain Injury Rehabilitation Directorate .................................................................................... 3
BIRD minimum dataset .......................................................................................................... 3
Inclusion and exclusion criteria .............................................................................................. 4
REDCap ................................................................................................................................ 4
Overview of data dictionary .................................................................................................... 4
NSW BIRD minimum data set ....................................................................................................... 6
Section 1: Demographics ....................................................................................................... 8
Section 2: Injury details ........................................................................................................ 21
Section 3: Pre-injury education or employment .................................................................... 40
Section 4: Compensation details .......................................................................................... 47
Section 5: Pre-injury accommodation and support ............................................................... 50
Section 6: Referral details .................................................................................................... 54
Section 7: Episode of care details ........................................................................................ 61
Section 8: Discharge details ................................................................................................. 76
Section 9: Discharge education or employment ................................................................... 82
Section 10: Outcome measures ........................................................................................... 88
Appendices ................................................................................................................................. 91
Appendix 1.1: Full list of codes for data element: language_spoken3 ................................... 91
Appendix 1.2: Full list of codes for data element: cob4 ....................................................... 103
Appendix 1.3: Full list of codes for data element: ref_unit_hosp ......................................... 110
References ................................................................................................................................ 120
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 1
Background
The NSW Brain Injury Rehabilitation Directorate (BIRD) data systems are designed to assist in
understanding the Brain Injury Rehabilitation Program (BIRP), contribute to service planning and to
maximise the recovery of persons who have experienced a traumatic brain injury (TBI). This is
achieved through:
identifying relevant clinical data complying with both NSW health data standards and the
requirements of the BIRP network
providing efficient data collection systems and procedures for the BIRP network
monitoring data collection systems to ensure data accuracy and integrity
providing regular reporting at an individual service level
providing regular reporting at a statewide level.
The BIRD Data and Information Management Committee oversees the data systems in place. The
committee comprises of clinical and administrative representatives from the BIRP network as well
as the BIRD Network Manager, Outcomes Manager and Data and Information Manager. The
committee meets regularly to discuss issues and topics related to the design, collection and
dissemination of the BIRP network’s data.
The BIRD undertook major changes to its data systems in the years 2017-18. Historically, the
database implemented by the BIRD for data collection at a statewide level was known as the CDS
– clinical data set. Originally designed as a stand-alone system for the collection of the BIRD
minimum data set (MDS) in 2004, the CDS expanded and developed to provide clinical information
about clients admitted to the BIRP network. Changes in the collection and reporting of local health
district (LHD) and NSW health data, that occurred in recent years, impacted on the collection,
analysis and reporting of clinical data from the CDS. As such, the CDS was gradually
decommissioned in 2018 and an updated data collection initiative implemented using a new
custom-designed system on REDCap.
Coinciding with the trial of a new data collection system, an opportunity to extensively review the
network’s data practices and processes presented itself. The BIRD Minimum Dataset Data
Dictionary was previously in its 2nd version as implemented on the CDS and was last reviewed
extensively in 2010. An extensive review of the MDS was thus undertaken by the BIRD Data and
Information Management Committee over the period July 2018 to October 2018.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 2
Introduction
The Brain Injury Rehabilitation Program
The BIRP was established in 1990 as a clinical network as part of a joint initiative between NSW
Health and the NSW Motor Accidents Authority. The BIRP provides specialist rehabilitation
interventions to children, young people and adults of working age who have sustained primarily a
Traumatic (Acquired) Brain Injury. The NSW BIRP currently consists of 15 adult and/or paediatric
centres distributed across the state (see Table 1).
Table 1. Brain Injury Rehabilitation Programs and their settings of care
Using
REDCap Adult inpatient
Adult community
Adult TLP
Paediatric inpatient
Paediatric community
Dubbo BIRP - - - -
Hunter Brain Injury Service (HBIS)
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Illawarra Brain Injury Service (IBIS)
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Liverpool BIRU (LBIRU)*
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Mid North Coast BIRS (MNC BIRS)†
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New England BIRS (NEBIRS)
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Mid-West BIRP (MWBIRP)
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Northern BIRS (NBIRS)
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Paediatric BIRT – Newcastle (PBIRT)‡
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Royal Rehab BIRS‡ - - -
Southern Area BIS (SABIS)
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Sydney Children’s Hospital Network – Randwick‡
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Sydney Children’s Hospital Network – Westmead*
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South West BIRS (SWBIRS)
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Westmead BIRS (WBIRS)
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* Use of own database † Consisting of Coffs Harbour and Port Macquarie branches ‡ No database
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 3
The BIRPs operate within defined settings of care: inpatient management, Transition Living
Programs (TLPs), and community or outreach rehabilitation services.
Inpatient management is generally provided for people who have attained the more severe
TBIs and have experienced more pronounced physical, cognitive and/or behavioural problems.
There are three adult and three paediatric inpatient programs across the network.
Transitional living programs or units are primarily available for people over 18 years, to
assist in the transition from acute or hospital based rehabilitation to home based rehabilitation.
There are currently seven TLPs across the network.
Community or outreach rehabilitation provides specialist rehabilitation to the person with
TBI once they have returned to the community. The services are aimed at increasing
independence and social participation. Community rehabilitation is provided at all BIRP
services across the network.
Brain Injury Rehabilitation Directorate
The BIRD is one of the clinical networks which make up the NSW Agency for Clinical Innovation.
The BIRD aims to actively assist the Brain Injury Rehabilitation Services (BIRS) of NSW in
engaging consumers, staff, clinicians and managers to deliver best practise rehabilitation services.
The BIRD takes into consideration both the need of the consumers and the need to operate
efficiently with the available resources. The BIRD recognises the contribution and importance of
data collection, analysis and research in achieving its aims.
BIRD minimum dataset
The MDS attempts to capture data of relevance and importance to the NSW BIRP network, while
maintaining compliance with national and state level data standards. The data collected traces
individual clients from their initial acceptance to a BIRP service until the point of their discharge
from that BIRP service, encompassing in many cases more than one episode of care (EOC) in
multiple settings of care (SOC). No follow up data collection is conducted after discharge unless
the client is readmitted to the service. Client’s may not only have multiple referrals within the same
BIRP service, but may also be admitted to multiple different BIRPs throughout the course of their
rehabilitation and thus may appear multiple times in the BIRD database. The MDS is divided into
ten sections.
1. Demographics
2. Injury
3. Pre-injury education and employment
4. Compensation
5. Pre-injury accommodation and support
6. Referral
7. Episode of care
8. Discharge
9. Discharge education and employment
10. Outcome measures.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 4
It is recognised that various demographic details (e.g. marital status, residential address) and
compensability status of a client may change during the course of their rehabilitation, however it is
recommended that this data element reflect the status of the client at time of referral to the BIRP
service and is therefore not expected to be regularly updated.
Inclusion and exclusion criteria
All client referrals accepted to one of the 15 BIRPs are entered in to the database. The majority of
clients will have sustained a severe to very severe TBI in accordance with the BIRP inclusion
criteria, however a small percentage may include mild, moderate, and non-TBI injuries admitted at
the discretion of the individual BIRPs. Paediatric services primarily include children up to the age of
16, after which they are gradually transitioned to one of the adult service. The adult services
primarily include adults of working age (16-65) but again may include those outside of these limits.
REDCap
REDCap (Research Electronic Data Capture) is a secure web-based portal designed specifically
for the electronic recording of data. REDCap has built-in data collection tools and real-time
reporting functions allowing for immediate feedback to users. The REDCap portal is hosted in a
government domain adhering to the privacy and confidentiality policies of NSW Health. All data
entered into REDCap is stored in a secure location on the NSW Health server. The BIRD Data
Manager is able to access all statewide data in REDCap, while end users are able to access only
their site-specific data.
BIRD started the transfer from CDS to REDCap in March 2018. At the time of writing this
document, 10 of the 15 BIRP sites were using REDCap as their primary data collection system.
Two others were using their own custom designed internal databases for data collection. These
sites are able to obtain their data and deliver it to the BIRD Data Manager for statewide reporting
purposes. The remaining three sites were not putting data systematically into REDCap or any other
database (see Table 1).
Users at each BIRP site (primarily administrative staff, clinicians and managers) input data for their
caseloads regularly. Each client entered is automatically assigned a system-generated client
identification number, devoid of any identifying information which can be used for internal searches
and identification processes. Each site is also assigned an automatic BIRP identification, a unique
4-digit number, which is then applied to all clients entered for that site as identified by the unique
user logins. The REDCap data system is actively monitored by both the end-users and the BIRD
Data & Information Manager to ensure data integrity and high completion rates.
Overview of data dictionary
This document describes and defines the BIRD MDS as implemented primarily on REDCap.
Unless otherwise specified, all data elements listed in the document are mandatory collection at a
statewide level. The data elements are grouped into their appropriate MDS section with each data
element displayed on a separate page. Specific REDCap database information is also included
which may only be useful for persons entering data. The information contained for each data
element is outlined below.
Data element title
Definition and intended use
Name of REDCap ‘instrument’ (or form) within which the data element is contained
data element name, or the variable name, which will be used in any data extract or data file
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 5
REDCap specific field label, or the prompt displayed on the users screen when inputting data into the system
Data element type or format
Whether or not the data element is an identifier, a field containing identifying information
Any special conditions for the data element’s use and functionality on REDCap
Data element options or categories and codes where applicable.
Note this document does not contain instructions on how to input data into REDCap, as that information is contained in the ‘BIRD REDCap user guide’ (internal document).
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 6
NSW BIRD minimum data set
Section 1: Demographics
1.1 BIRP ID 1.2 Patient ID
1.3 First name 1.4 Surname
1.5 MRN 1.6 Medicare
1.7 Date of birth 1.8 Age
1.9 Street address 1.10 Suburb
1.11 Postcode 1.12 State
1.13 Sex 1.14 Indigenous status
1.15 Marital status 1.16 Language spoken
1.17 Country of birth 1.18 NDIA
Section 2: Injury details
2.1 Date of injury 2.2 Time since injury
2.3 Age at injury 2.4 Type of injury
2.5 Injury circumstance (TBI) 2.6 Injury circumstance (TBI: MVA)
2.7 Injury circumstance (TBI: non-MVA) 2.8 Injury Circumstance (non-TBI)
2.9 Injury circumstance (non-TBI: hypoxia)* 2.10 GCS (at scene)
2.11 GCS (at admission) 2.12 PTA (yes/no)
2.13 PTA (status) 2.14 PTA (range)
2.15 PTA (days) 2.16 PTA (unknown)
2.17 Paeds severity rating 2.18 Paeds Injury Significance
2.19 Previous brain injury
Section 3: Pre-injury education and employment
3.1 Pre-injury highest education 3.2 Pre-injury employment status
3.3 Pre-injury employment mode 3.4 Pre-injury job title
3.5 Pre-injury unemployment status 3.6 Pre-injury study status
3.7 Pre-injury study type
Section 4: Compensation details
4.1 Claim type 4.2 Other chargeable
4.3 Claim status
Section 5: Pre-injury accommodation and support
5.1 Pre-injury accommodation 5.2 Pre-injury living situation
5.3 Pre-injury support level 5.4 Pre-injury support hours
Section 6: Referral details
6.1 Referral date 6.2 Referral source
6.3 Referral hospital 6.4 Referral BIRP unit
6.5 Referral setting of care 6.6 Referral outcome
6.7 Referral non acceptance reason§
§ Indicates non-mandatory fields
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 7
Section 7: Episode of care details
7.1 EOC setting of care 7.2 EOC start date
7.3 EOC admission type 7.4 EOC accommodation (start)
7.5 EOC living situation (start) 7.6 EOC support level (start)
7.7 EOC support hours (start) 7.8 EOC end date
7.9 Length of EOC 7.10 EOC end reason
7.11 EOC transfer setting of care 7.12 EOC accommodation (end)
7.13 EOC living situation (end) 7.14 EOC support level (end)
7.15 EOC support hours (end)
Section 8: Discharge details
8.1 Discharge reason 8.2 Discharge incomplete reason
8.3 Cause of death 8.4 Discharge additional services required
8.5 Discharge additional services specific 8.6 Discharge BIRP unit
Section 9: Discharge education and employment
9.1 Discharge employment status 9.2 Discharge employment mode
9.3 Discharge job title 9.4 Discharge unemployment status
9.5 Discharge study status 9.6 Discharge study type
Section 10: Outcome measures
10.1 FIM** 10.2 MPAI-4
10.3 PROMIS-29
** Inpatient clients only
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 8
BIRP ID
Definition
The identifying number of the BIRP unit providing the client services. BIRP ID is automatically assigned to clients based on the BIRP associated with the data entry user upon login.
Data element specifics
Redcap instrument name Demographics
Redcap data element name redcap_data_access_group
Redcap field label N/A
Data element type System generated 4 digit number
Identifier No
Condition Nil
Data element options REDCap code
Dubbo BIRP 1138
HBIS 1135
IBIS 1139
MNC BIRS – Coffs Harbour 1186
MNC BIRS – Port Macquarie 1185
MW BIRP 1193
NBIRS 1172
NEBIRS 1053
SABIS 1074
SWBIRS 1173
WBIRS 1184
Section 1: Demographics
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 9
Patient ID
Definition
The Patient ID is automatically assigned to a client on a consecutive numbering basis per site, prefixed by the specific BIRP ID.
Data element specifics
REDCap instrument name Demographics
REDCap data element name patient_id
REDCap field label Patient ID
Data element type system generated ≥1 digit number
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
First name
Definition
Person’s given name(s)
Data element specifics
REDCap instrument name Demographics
REDCap data element name first_name
REDCap field label First Name
Data element type text/string
Identifier Yes
Condition Nil
Data element options REDCap code
N/A N/A
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 10
Surname
Definition
Person’s family name
Data element specifics
REDCap instrument name Demographics
REDCap data element name last_name
REDCap field label Surname
Data element type text/string
Identifier Yes
Condition Nil
Data element options REDCap cde
N/A N/A
MRN
Definition
Medical record number (MRN) is a person identifier (up to 8 digit number) unique to each hospital or facility in NSW
Data element specifics
REDCap instrument name demographics
REDCap data element name mrn
REDCap field label MRN
Data element type Up to 8 digit number
Identifier Yes
Condition Nil
Data element options REDCap code
N/A N/A
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 11
Medicare
Definition
The 11 digit number found on an individual’s Medicare card used as a unique identifier and for data linkage purposes
Data element specifics
REDCap instrument name Demographics
REDCap data element name medicare
REDCap field label Medicare #
Data element type 11 digit number
Identifier Yes
Condition Nil
Data element options REDCap code
N/A N/A
Date of birth
Definition
The date of birth of the person
Data element specifics
REDCap instrument name Demographics
REDCap data element name dob
REDCap field label Date of birth
Data element type Date (yyyy-mm-dd)
Identifier Yes
Condition Nil
Data element options REDCap code
N/A N/A
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 12
Age
Definition
The person’s current age, expressed in years. The field is derived from the ‘Date of birth’ field and calculated to the current (today’s) date. This field is updated each time the form is accessed.
Data element specifics
REDCap instrument name Demographics
REDCap data element name age
REDCap field label Age
Data element type System generated number > 0
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
Street address
Definition
Street address of usual residence of the person, entered at time of referral to the service.
Data element specifics
REDCap instrument name Demographics
REDCap data element name address
REDCap field label Street address
Data element type Text/string
Identifier Yes
Condition Nil
Data element options REDCap code
N/A N/A
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 13
Suburb
Definition
Suburb or town of usual residence of the person, entered at time of referral to the service.
Data element specifics
REDCap instrument name Demographics
REDCap data element name suburb
REDCap field label Suburb
Data element type Text/string
Identifier Yes
Condition Nil
Data element options REDCap code
N/A N/A
Postcode
Definition
Postcode of usual residence of the person, entered at time of referral to the service.
Data element specifics
REDCap instrument name Demographics
REDCap data element name postcode
REDCap field label Postcode
Data element type 4 digit number
Identifier Yes
Condition Nil
Data element options REDCap code
N/A N/A
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 14
State
Definition
State of usual residence of the person, entered at time of referral to the service
Data element specifics
REDCap instrument name Demographics
REDCap data element name state
REDCap field label State
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
ACT 0
NSW 1
QLD 2
SA 3
VIC 4
WA 5
NT 6
TAS 7
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 15
Sex
Definition
The identification of the person as male, female or other, with other encompassing any person not exclusively identifying as male or female (including but not limited to indeterminate, intersex, transgender).
REDCap specifics
REDCap instrument name Demographics
REDCap data element name sex
REDCap field label Sex
Data element type Multiple choice
Identifier no
Condition nil
Data element options REDCap code
Male 1
Female 2
Other 3
Not stated or inadequately described 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 16
Indigenous status
Definition
An Aboriginal or Torres Strait Islander is a person of Aboriginal and/or Torres Strait Islander descent who identifies as an Aboriginal and/or Torres Strait Islander and is accepted as such by the community in which he or she lives. Codes for the Indigenous status element were taken from Admitted Patient Data Collection1
REDCap specifics
REDCap instrument name Demographics
REDCap data element name indigenous_status
REDCap field label Indigenous status
Data element type Multiple choice
Identifier Yes
Condition Nil
Data element options REDCap code
Aboriginal 1
Torres Strait Islander 2
Both Aboriginal and Torres Strait Islander origin
3
Neither Aboriginal nor Torres Strait Islander origin
4
Indigenous – not further specified 5
Declined to respond 8
Not stated or unknown 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 17
Marital status
Definition
Marital status of person entered at time of referral to BIRP service. Field options and codes were taken from the Australian Bureau of Statistics (ABS) Census of Population and Housing classifications2
REDCap specifics
REDCap instrument name Demographics
REDCap data element name marital_status
REDCap field label Marital status
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Single (never married) 1
Widowed 2
Divorced 3
Separated 4
Married or de facto 5
Not stated or unknown 9999
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Language spoken
Definition
The language (including sign language) most preferred by the person for communication. This may be a language other than English even where the person can speak fluent English. Languages and codes were taken from the ABS Standard Australian Classification of Languages.3
REDCap specifics
REDCap instrument name Demographics
REDCap data element name language_spoken
REDCap field label Main language spoken at home
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
See Appendix 1.1 See Appendix 1.1
Note: Includes a free-text ‘other’ option (data element name: language_other) to specify language if selected ‘other’ option.
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Country of birth
Definition
The country in which the person was born. Countries and codes were taken from the ABS Standard Australian Classification of Countries4
REDCap specifics
REDCap instrument name Demographics
REDCap data element name cob
REDCap field label Country of birth
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
See Appendix 1.2 See Appendix 1.2
Note: Includes a free-text ‘other’ option (data element name: cob_other) to specify country if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 20
NDIA
Definition
Whether or not the person has been accepted into the National Disability Insurance Scheme (NDIS), regardless of whether they have an NDIS plan approved or not.
REDCap specifics
REDCap instrument name Demographics
REDCap data element name ndia
REDCap field label Has client been accepted as an NDIS participant”
Data element type Multiple choice
Identifier no
Condition nil
Data element options REDCap code
No 0
Yes 1
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 21
Date of injury
Definition
Date the person’s brain injury occurred. If the exact date is not known, an approximation is entered as the first of the month (e.g. yyyy-01-01), where yyyy is the approximate year of injury.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name doi
REDCap field label Date of injury
Data element type Date (yyyy-mm-dd)
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
Section 2: Injury details
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 22
Time since injury
Definition
The time elapsed, in months, since the person’s injury. The field is automatically derived from the ‘Date of injury’ entered and calculated to the current (today’s) date. This field is automatically updated each time the form is accessed.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name timesinceinj
REDCap field label Time since injury
Data element type System generated/ number > 0
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 23
Age at injury
Definition
The person’s age, expressed in years, at the time they had their injury. The field is automatically derived from the ‘Date of injury’ and ‘Date of birth’ fields and is updated each time the form is accessed.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name Ageatinj
REDCap field label Age at injury
Data element type System generated number > 0
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 24
Type of injury
Definition
The classification of the injury into either TBI or non-TBI. A TBI is an acquired brain injury occurring as a result of external force to the brain that occurs after birth impacting on brain function and development. TBIs include those caused by motor vehicle accidents (MVA), assaults and falls. A non-TBI is caused by internal events such as a stroke, lack of oxygen to the brain resulting from ruptured or blocked blood vessels in the brain, near drowning, brain tumours, poisoning or infections.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name injury_type
REDCap field label Type of injury
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Non-TBI 0
TBI 1
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 25
Injury circumstance (TBI)
Definition
If the type of injury was a TBI, whether the injury was caused from a MVA or not
REDCap specifics
REDCap instrument name injury_details
REDCap data element name injury_circ_tbitype
REDCap field label If TBI, was the injury a result of a motor
vehicle accident?
Data element type Multiple choice
Identifier No
Condition If injury_type = TBI(1)
Data element options REDCap code
MVA 0
Non - MVA 1
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 26
Injury Circumstance (TBI - MVA)
Definition
Description of the circumstances under which the injury occurred, when the injury type is a TBI and due to a motor vehicle accident
REDCap specifics
REDCap instrument name injury_details
REDCap data element name injury_circ_tbi_mva
REDCap field label If TBI was due to a motor vehicle accident,
specify the injury circumstance
Data element type Multiple choice
Identifier No
Condition If injury_type = TBI(1) AND injury_circ_tbimva = MVA(0)
Data element options REDCap code
MVA driver 1
MVA passenger 2
MVA Motorcycle rider or pillon passenger 3
MVA vs pedestrian 4
MVA vs skateboard, rollerblade, scooter or wheelchair
5
MVA vs pedal cyclist or pushbike 7
MVA unspecified 9
Other MVA 16
Not stated or unknown 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 27
Injury circumstance (TBI – non-MVA)
Definition
Description of the circumstances under which the injury occurred, when the injury type is a TBI and due to something other than a motor vehicle accident
REDCap specifics
REDCap instrument name injury_details
REDCap data element name injury_circ_tbi_nonmva
REDCap field label If TBI was not from a motor vehicle accident,
specify the injury circumstance
Data element type Multiple choice
Identifier No
Condition If injury_type = TBI(1) AND injury_circ_tbimva = non-MVA(1)
Data element options REDCap code
Non-MVA skateboard, rollerblade, scooter or wheelchair
6
Non-MVA pedal cyclist or pushbike 8
Gunshot 10
Assault or non-accidental injury 11
Fall or dive on same level or from one level to another
12
Fall from horse 13
Sport related 14
Other TBI (specify) 15
Not stated or unknown 9999
Note: Includes a free-text ‘other’ option (data element name: injury_circ_tbi_nonmva_other) to specify injury circumstance if selected ’other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 28
Injury circumstance (non-TBI)
Definition
Circumstances under which injury occurred, when the injury type is non-TBI.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name injury_circ_abi
REDCap field label If non-TBI, Injury Circumstance
Data element type Multiple choice
Identifier No
Condition If injury_type = Non-TBI(0)
Data element options REDCap code
Hypoxia 16
Stroke 17
Infections 18
Other non-TBI (specify) 19
Not stated or unknown 9999
Note: Includes a free-text ‘other’ option (data element name: injury_circ_abi_other) to specify injury circumstance if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 29
Injury circumstance (non-TBI: hypoxia)
Definition
Detailed description of the circumstance/cause when the non-TBI was due to hypoxia (e.g. near drowning, hanging, cardiac arrest, or asthma). It is NOT mandatory to enter information for this field.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name injury_circ_hypox
REDCap field label If hypoxia, specify cause
Data element type Multiple choice
Identifier No
Condition If injury_type = Non-TBI(0) AND injury_circ_abi = Hypoxia(16)
Data element options REDCap code
Cardiac arrest or asthma 0
Hanging 1
Water related or near drowning 2
Other (specify) 3
Not stated or unknown 9999
Note: Includes a free-text ‘other’ option (data element name: injury_circ_hypox_other) to specify hypoxic injury if selected ‘other’ option
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 30
Glasgow Coma Scale (at scene)
Definition
Glasgow Coma Scale – available score at scene of injury
REDCap specifics
REDCap instrument name injury_details
data element nameREDCap data element name
gcs_scene
REDCap field label GCS at scene
Data element type Number, range 3-15
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 31
Glasgow Coma Scale (at admission)
Definition
Glasgow Coma Scale – available score at admission to acute hospital following injury
REDCap specifics
REDCap instrument name injury_details
data element nameREDCap data element name
gcs_adm
REDCap field label GCS at admission (to acute hospital)
Data element type Number, range 3-15
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 32
PTA (yes/no)
Definition
When the injury is of a TBI nature, whether or not the client experienced PTA, regardless if the exact length of PTA is known or was measured. In situations where PTA is unknown, an informed decision needs to be made as to whether PTA was experienced or not.
REDCap specifics
REDCap instrument name injury_details
data element nameREDCap data element name
pta_yn
REDCap field label Did the client experience PTA?
Data element type Multiple choice
Identifier No
Condition If injury_type = TBI(1)
Data element options REDCap code
No 0
Yes 1
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 33
PTA (status)
Definition
The status of PTA, if it was experienced. When selecting ‘Still in PTA’ (i.e. PTA testing is still underway at the time of data entry), this field is required to be updated at the time of client’s discharge from the service to reflect the completion or cessation of PTA testing. If PTA ≥ 184 days (i.e. 6 months), this is coded as first ‘Emerged from PTA and number of date or range is known’, and option ‘184 days chronic amnesic state’ selected in the next data element, under PTA (range). If client is under 8 years of age at the time of their injury, no PTA testing is undertaken and the option ‘Not applicable – injury in child < 8yrs’ is selected For all other reasons for not having a recorded PTA, option ‘Unable to be estimated or duration unknown’ is selected.
REDCap specifics
REDCap instrument name injury_details
data element nameREDCap data element name
pta_status
REDCap field label If yes, specify PTA status
Data element type Multiple choice
Identifier No
Condition If injury_type = TBI(1) AND pta_yn = Yes(1)
Data element options REDCap code
Emerged from PTA and number of days or range is known
0
Not applicable - injury in child < 8yrs 3
Still in PTA†† 4
Unable to be estimated or duration unknown 5
†† Request to update provided at time of discharge
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 34
PTA (range)
Definition
Length of PTA severity ranges. Descriptors of severity ranges were derived through consultation of the available literature on injury severity and through clinical consensus for the purposes of analysis and reporting.5 Clinically derived estimates of the PTA range may be entered here as well.
REDCap specifics
REDCap instrument name injury_details
data element nameREDCap data element name
pta_range
REDCap field label Length of PTA (range)
Data element type Multiple choice
Identifier No
Condition If injury_type = TBI(1) AND pta_yn = Yes(1) AND pta_status = Emerged from PTA and number of days or range is known (0)
Data element options REDCap code
< 24hours (mild) 0
1-7 days (moderate) 1
8-28 days (severe) 2
29-90 days (very severe) 3
91-183 days (very severe) 4
>=184 days (chronic amnesic state) 5
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 35
PTA (days)
Definition
Number of days that client was in PTA. Clinically derived estimates of the PTA length are also accepted and entered.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name pta_days
REDCap field label No. of PTA days
Data element type Number ≥ 0
Identifier No
Condition
If injury_type = TBI(1) AND pta_yn = Yes(1) AND pta_status = Emerged from PTA and number of days or range is known (0) AND (pta_range =
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PTA (unknown)
Definition
When PTA is known to have been experienced by the client, but was not tested, is unknown, was not estimated, or is missing, the reason why is specified.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name pta_unableest
REDCap field label If PTA is unknown or unable to be estimated,
specify why
Data element type Multiple choice
Identifier No
Condition If injury_type = TBI(1) AND pta_yn = Yes(1) AND pta_status = Unable to be estimated or duration unknown (5)
Data element options REDCap code
Not tested 0
Severe language impairment 1
Severe behavioural impairment 2
Other 3
Note: Includes a free-text ‘other’ option (data element name: pta_unableest_other) to specify reasons if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 37
Paeds severity rating
Definition
PTA cannot be measured correctly in young children so where PTA is unavailable due to age at injury being less than 8 years, clinicians determine a severity rating using their clinical judgement, cerebral imaging and/or neuropsychological report to rate the child’s injury as mild, moderate, or severe.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name paeds_severity
REDCap field label Severity rating for paeds
Data element type Multiple choice
Identifier No
Condition if injury_type = TBI(1) AND pta_status = Not applicable-injury in child
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 38
Paeds injury significance
Definition
When unable to determine the severity of a paediatric injury, a significance rating is provided instead.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name paeds_sig
REDCap field label For injuries where severity cannot be
determined, was the injury significant?
Data element type Multiple choice
Identifier No
Condition If injury_type = TBI(1) AND pta_status = Not applicable-injury in child
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 39
Previous brain injury
Definition
Any known brain injury prior to the current injury that required hospitalisation.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name previousinj
REDCap field label Has client had a previous brain injury
(requiring hospitalisation)?
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
No 0
Yes 1
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 40
Pre-injury highest education
Definition
The highest level of education that the person had completed at the time of their injury.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name preinj_highestedu
REDCap field label Highest education attained at time of injury
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
No formal education 0
Primary school 1
High school incomplete 2
High school yr 10 cert 3
High school yr 12 4
TAFE or college (Cert, Diploma, Adv Dip) 5
University (Bachelor, Masters, PhD) 6
Unknown 9999
Section 3: Pre-injury education
or employment
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 41
Pre-injury employment status
Definition
The person’s employment status in binary format at the time of their injury, with employment defined as being in paid work. If the client is on official paid or unpaid leave (e.g. annual, sick), this is entered as being currently employed. This does not include verbal or unofficial agreement regarding potential future employment.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name preinj_emp_yn
REDCap field label Was client working at time of injury?
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
No 0
Yes 1
Unknown 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 42
Pre-injury employment mode
Definition
If the person was working at the time of their injury, whether that was in a full or part time capacity. Full time is defined as working 35 or more hours in a week, with part time defined as working less than 35 hours per week as per ABS Labour Statistics classifications6
REDCap specifics
REDCap instrument name injury_details
REDCap data element name preinj_emp_status
REDCap field label If working, was it full or part time
Data element type Multiple choice
Identifier No
Condition If preinj_emp_yn = Yes(1)
Data element options REDCap code
Employed full time (>=35 hours/wk) 0
Employed part time (< 35 hours/wk) 1
Unknown 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 43
Pre-injury job title
Definition
The person’s job title if employed at the time of injury, entered as free text. Job titles are then used to classify jobs into occupation categories in the data pre-processing stage according to the Australian and New Zealand Standard Classification of Occupations for reporting purposes.7
REDCap specifics
REDCap instrument name injury_details
REDCap data element name preinj_jobtitle
REDCap field label If working, what was their job title
Data element type Text/string
Identifier No
Condition If preinj_emp_yn = Yes(1)
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 44
Pre-injury unemployment status
Definition
The person’s main activity status if they were not in paid employment. Activity status includes but is not limited to categories such as ‘volunteer’, ‘student’, ‘job-seeking or ‘in-between jobs’, ‘retired’, ‘homemaker’, ‘unpaid family carer’, and so on.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name preinj_emp_status_2
REDCap field label If not working, what was their activity status
Data element type Text/string
Identifier No
Condition if preinj_emp_yn = No(0)
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 45
Pre-injury study status
Definition
Whether the person was studying or not at the time of their injury. Studying includes but is not limited to primary and high school, TAFE, college, or university.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name preinj_edu_status
REDCap field label Was client studying at time of injury?
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
No 0
Yes 1
Unknown 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 46
Pre-injury study type
Definition
The specific type of study the person was engaging in at the time of their injury.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name preinj_edu_type
REDCap field label Study type at time of injury
Data element type Multiple choice
Identifier No
Condition If preinj_edu_status = Yes(1)
Data element options REDCap code
School student 0
TAFE or college (includes apprenticeship) 1
University 2
Other 5
Unknown 9999
Note: Includes a free-text ‘other’ option (data element name: preinj_edu_type_other) to specify study type if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 47
Note: REDCap allows the user to add up to three claims per injury (i.e. repeating the data elements ‘Claim type’, ‘Other chargeable’, and ‘Claim status’).
Claim type
Definition
The potential or actual source of compensation should this be pursued by the client.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name claim_type
REDCap field label Claim type/ Financial status
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Non-chargeable 0
NSW CTP 1
icare LTC 2
Workers comp or workers insurance 3
Interstate motor vehicle compensation 4
Other chargeable 5
Not stated or unknown 9999
Section 4: Compensation details
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 48
Other chargeable
Definition
If compensation source is something other than that listed in the claim_type field, a free text option to specify the source is presented. This includes but is not limited to victims of crime, armed forces, health fund, and department of veterans’ affair, and so on.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name claim_type_other
REDCap field label If other chargeable, specify
Data element type Text/string
Identifier No
Condition If claim_type = Other chargeable(5)
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 49
Claim status
Definition
The status of each applicable claim, as recorded at the time of referral into the BIRP service or initial data entry. Any person who is entitled to the payment of, or who has been paid compensation for, damages or other benefits (including a payment in settlement of a claim for compensation, damages or other benefits) in respect of the injury, illness or disease for which he or she is receiving care and treatment, is classified as a compensable patient. Claim status is to be recorded on the person’s time of referral or initial data entry. It is recognised that the compensable status of a client may change during the course of their rehabilitation, and it is therefore recommended that this data element reflect the status of the client at time of referral to the BIRP service.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name comp_status
REDCap field label Status of claim
Data element type Multiple choice
Identifier No
Condition
If claim_type = NSW CTP(1) OR icare LTC(2) OR Workers comp or workers insurance(3) OR Interstate motor vehicle compensation(4) OR Other chargeable(5)
Data element options REDCap code
Claim not yet lodged 0
Pending – payment without prejudice 1
Pending – Payment under paediatric less than $20000 scheme
2
Pending – liability not determined or in dispute 3
Compensable – liability accepted 4
Compensable- claim settled and paying 5
Compensable – claim settled and public 6
Compensable – LTC interim participant 7
Compensable – LTC lifetime participant 8
Non-compensable – liability denied 9
Not stated or unknown 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 50
Pre-injury accommodation
Definition
The usual residential accommodation type prior to injury, or where the client slept the night before they had their injury. These fields are modified slightly from the National Health Data Dictionary.8
REDCap specifics
REDCap instrument name injury_details
REDCap data element name accominj
REDCap field label The client’s usual residential accommodation type prior to injury
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Private residence (e.g. house, flat, bedsitter, caravan, boat, independent unit in retirement village), including privately and publicly rented homes
0
Psychiatric hospital 1
Residential aged care service 2
Specialised alcohol or other drug treatment residence 3
Specialised mental health community-based residential support service
4
Domestic-scale supported living facility (e.g. group home for people with disability)
5
Boarding, rooming house, hostel or hostel type accommodation, not including aged person’s hostel
6
Homeless (e.g. homeless person’s shelter, public place) 7
Shelter or refuge (not including homeless person’s shelter) 8
Other supported accommodation 9
Prison, remand centre or youth training centre 10
Other accommodation, not elsewhere classified 11
Acute hospital 12
Unknown or unable to determine 9999
Section 5: Pre-injury accommodation
and support
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Pre-injury living situation
Definition
The living situation of the person at the time they had their injury, or who they were living with the night before they had their injury. Multiple entries are allowed in this field. These fields are modified slightly from the National Stroke Data Dictionary and TBI-impact guidelines for common data elements.9,10
REDCap specifics
REDCap instrument name injury_details
REDCap data element name livingsitinj
REDCap field label Living situation prior to injury
Data element type Multiple choice
Identifier No
Condition
If accominj = Private residence(0) OR if accominj = Residential aged care services(2) OR if accominj = Domestic-scale supported living facility(5) OR if accominj = Boarding/rooming house/hostel(6)
Data element options REDCap code
Lives alone 0
Lives with spouse/partner 1
Lives with parents 2
Lives with other family 3
Foster care (in care) 5
Child services (out of home care) 6
Lives with other (specify) 7
Inadequately described or unknown 9999
Note: Includes a free-text ‘other’ option (data element name: livingsitinj_other) to specify living situation if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 52
Pre-injury support level
Definition
The support level received by the person prior to having their injury.
REDCap specifics
REDCap instrument name injury_details
REDCap data element name supportinj
REDCap field label What was the client’s level of support at the time of their injury?
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Independent 0
Independent with aids 1
Dependent (1 person) 2
Dependent (2 people) 3
Dependent (3 or more people) 4
Inadequately described or unknown 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 53
Pre-injury support hours
Definition
If dependent on other people, the number of hours or days per week of support provided to the client is specified. The field options are derived from the Manual for the Care and Needs Scale.11
REDCap specifics
REDCap instrument name injury_details
REDCap data element name supporthrsinj
REDCap field label If dependent on others, specify the total support provided by the support persons at the time of their injury
Data element type Multiple choice
Identifier No
Condition If supportinj = Dependent (1 person)(2) OR Dependent (2 people)(3) OR Dependent (3 or more people)(4)
Data element options REDCap code
Intermittent, less than weekly support or client can live alone
1
Support provided at least once per week or
client can be left alone for almost all week 2
Support provided a few days per week or client can be left alone for a few days a week
3
Support provided up to 11 hours per day or client can be left alone for part of the day and overnight
4
Support provided 12-19 hours per day or client can be left alone for part of the day but not overnight
5
Support provided 20-23 hours per day or client can be left alone for a few hours
6
Support provided 24 hours per day or cannot leave client alone
7
Inadequately described or unknown 9999
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 54
Referral date
Definition
Date referral to BIRP service was made by the referring agency, irrespective of client readiness for rehabilitation. The first referral of a client to the BIRP unit is the main referral for REDCap data collection and reporting purposes.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name ref_date
REDCap field label Referral date
Data element type Date (yyyy-mm-dd)
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
Section 6: Referral details
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 55
Referral source
Definition
The source of referral to the BIRP service
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name ref_source
REDCap field label Referral source
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Own BIRP unit 0
Other BIRP unit 1
Hospital 2
Family or self-referral 3
GP or specialist 4
School or work place 5
Non-BIRP brain injury clinic 6
Brain injury support group 7
Community agency 8
Other rehab facility 9
Nursing home 10
Other 11
Not stated or unknown 9999
Note: Includes a free-text ‘other’ option (data element name: ref_source_other) to specify referral source if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 56
Referral hospital
Definition
If the referral source was a hospital, the specific hospital that made the referral.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name ref_unit_hosp
REDCap field label Referral hospital
Data element type Multiple choice
Identifier No
Condition If ref_source = Hospital(2)
Data element options REDCap code
See Appendix 1.3 See Appendix 1.3
Note: Includes a free-text ‘other’ option (data element name: ref_unit_hosp_other) to specify hospital if selected ‘other’ option.
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 57
Referral BIRP unit
Definition
If the referral source was from another BIRP unit, the specific BIRP that made the referral.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name ref_unit_otherbirp
REDCap field label Referral BIRP unit
Data element type Multiple choice
Identifier No
Condition If ref_source = Other BIRP unit(1)
Data element options REDCap code
Liverpool BIRU 1
Royal Rehab BIRS 2
Westmead BIRS 3
HBIS 4
IBIS 5
Dubbo BIRP 6
MWBIRP 7
NEBIRS 8
Northern BIRS 9
Port Macquarie – MNC BIRS 10
Coffs Harbour – MNC BIRS 11
SABIS 12
SWBIRS 13
SCHN – Randwick 14
SCHN – Westmead 15
PBIRT – Newcastle 16
Unknown 9999
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Referral setting of care
Definition
If the referral source was from another BIRP unit, the setting of care the client is being referred from at that BIRP unit.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name ref_soc
REDCap field label Referral setting of care
Data element type Multiple choice
Identifier No
Condition If ref_source = Other BIRP unit(1)
Data element options REDCap code
Adult – inpatient 0
Adult – community (including non-inpatient, outreach or rehab)
1
Adult – transitional living unit 2
Paediatric – inpatient 3
Paediatric – outpatient (community including non-inpatient or outreach)
4
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Referral outcome
Definition
The decision reached by the BIRP service after the client referral was reviewed for intake. Only accepted clients are reported on in BIRD statewide reports, however the field options ‘pending’, ‘not-accepted’ and ‘consult or review’ are included for reporting on an individual BIRP unit level. It is NOT mandatory to enter clients who are ‘pending’, ‘not accepted’ or ‘consult orreview’ into REDCap. Notes Acceptance of referrals is decided by the individuals unit’s intake criteria. Consults or reviews are one-off provisions of service, in which the intervention does not result in an episode of care e.g. phone consultations.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name ref_outcome
REDCap field label Referral outcome
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Pending 0
Accepted 1
Not accepted 2
Consult or review 3
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 60
Referral non acceptance reason
Definition
Reason for client not being accepted. This is a non-mandatory item and is only used for those BIRP services wishing to enter in clients that are not accepted.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name ref_notaccept
REDCap field label Reason for non-acceptance
Data element type Multiple choice
Identifier No
Condition If ref_outcome = Accepted(2)
Data element options REDCap code
No rehab goals 0
Out of area 1
Not TBI 2
TBI – symptoms resolved 3
Doesn’t meet age criteria 4
No capacity to engage in rehab process 5
Mild TBI – GP managed 6
Client declined service 7
Other (specify) 8
Note: Includes a free-text ‘other’ option (data element name: ref_notaccept_other) to specify reason if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 61
EOC setting of care
Definition
The type of service the client will receive once admitted to the BIRP. Note A setting of care can have many episodes of care within it. The first episode of care is a New admission and subsequent episodes of care are Readmission within that setting of care.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_soc
REDCap field label Setting of Care
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Adult – inpatient 0
Adult – community (including non-inpatient, outreach or rehab)
1
Adult – transitional living unit 2
Paediatric – inpatient 3
Paediatric – outpatient (community including non-inpatient or outreach
4
Section 7: Episode of care details
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 62
EOC start date
Definition
Date on which a client starts an EOC. ‘Episode start’ begins when the client starts active rehabilitation with the service. Inpatient and TLP settings have distinct EOC start (and end) dates which correspond to the first occasion of service, or the day of admission to a designated inpatient or TLP bed. Community EOC start dates correspond to the BIRP service’s first contact with the client in the designated SOC after the client referral is accepted.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_startdate
REDCap field label EOC start date
Data element type Date (yyyy-mm-dd)
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 63
EOC admission type
Definition
Admission type classifies client’s as either new or readmission within a specific setting of care for an individual BIRP service. The first episode of care is a ‘New admission’ and subsequent episodes of care are ‘Readmission’ within that setting of care.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_admtype
REDCap field label EOC type of admission
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
New admission 0
Readmission 1
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 64
EOC Accommodation (Start)
Definition
The usual residential accommodation captured at the start of an EOC, or where the client slept the night before they started the EOC. These fields are modified slightly from the National Health Data Dictionary.8
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_preaccom
REDCap field label The client’s usual residential accommodation type prior to starting EOC
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Private residence (e.g. house, flat, bedsitter, caravan, boat, independent unit in retirement village), including privately and publicly rented homes
0
Psychiatric hospital 1
Residential aged care service 2
Specialised alcohol or other drug treatment residence 3
Specialised mental health community-based residential support service 4
Domestic-scale supported living facility (e.g. group home for people with disability)
5
Boarding, rooming house, hostel or hostel type accommodation, not including aged person’s hostel
6
Homeless (e.g. homeless person’s shelter, public place) 7
Shelter or refuge (not including homeless person’s shelter) 8
Other supported accommodation 9
Prison, remand centre or youth training centre 10
Other accommodation, not elsewhere classified 11
Acute hospital 12
BIRP transitional living unit 13
BIRP inpatient ward 14
Other inpatient rehab 15
Unknown or unable to determine 9999
Note: Includes a free-text ‘other’ option (data element name: eoc_preaccom_other) to specify accommodation if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 65
EOC living situation (start)
Definition
The living situation of the person at the start of the EOC, or who they were living with the night before they started the EOC. Multiple entries are allowed in this field. These fields are modified slightly from the National Stroke Data Dictionary and TBI-impact guidelines.9,10
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_ prelivingsit
REDCap field label Living situation prior to starting EOC
Data element type Multiple choice
Identifier No
Condition
If eoc_preaccom = Private residence(0) OR if eoc_preaccom = Residential aged care services(2) OR if eoc_preaccom = Domestic-scale supported living facility(5) OR if eoc_preaccom = Boarding, rooming house or hostel(6)
Data element options REDCap code
Lives alone 0
Lives with spouse or partner 1
Lives with parents 2
Lives with other family 3
Foster care (in care) 5
Child services (out of home care) 6
Lives with other (specify) 7
Inadequately described or unknown 9999
Note: Includes a free-text ‘other’ option (data element name: eoc_prelivingsit_other) to specify support level if selected ‘other’ option.
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 66
EOC Support Level (Start)
Definition
The support level received by the person prior to commencing EOC.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_presupport
REDCap field label What is the client’s level of support prior to commencing EOC?
Data element type Multiple choice
Identifier no
Condition nil
Data element options REDCap code
Independent 0
Independent with aids 1
Dependent (1 person) 2
Dependent (2 people) 3
Dependent (3 or more people) 4
Inadequately described or unknown 9999
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 67
EOC support hours (start)
Definition
If the client was dependent on other people at the start of the EOC, the number of hours or days per week of support provided to the client is specified. The field options are derived from the Manual for the Care and Needs Scale.11
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_ presupporthrs
REDCap field label If dependent on others, specify the total support provided by the support persons at the start of the EOC
Data element type Multiple choice
Identifier No
Condition
If eoc_presupport = Dependent (1 person)(2) OR eoc_presupport = Dependent (2 people)(3) OR eoc_presupport = Dependent (3 or more people)(4)
Data element options REDCap code
Intermittent, less than weekly support or client can live alone
1
Support provided at least once per week or
client can be left alone for almost all week 2
Support provided a few days per week or client can be left alone for a few days a week
3
Support provided up to 11 hours per day or client can be left alone for part of the day and overnight
4
Support provided 12-19 hours per day or client can be left alone for part of the day but not overnight
5
Support provided 20-23 hours per day or client can be left alone for a few hours
6
Support provided 24 hours per day or cannot leave client alone
7
Inadequately described or unknown 9999
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 68
EOC end date
Definition
Date on which a patient completes an episode of care. Episode end is the process by which a BIRP unit records the completion of an episode of care. The end of episode of care may or may not indicate the discharge of the client from the service. A client can end an episode of care in any BIRP setting of care and require further or more intensive rehabilitation in other settings of care. In such circumstances, clients ending an episode of care are not discharged from the service but are transferred to a separate setting of care, e.g. from community to TLP.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_enddate
REDCap field label EOC end date
Data element type Date (dddd-mm-yy)
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 69
Length of EOC
Definition
The length of time in days the client was present in a specific EOC, automatically calculated from the EOC start and end dates entered. Note There are no overlaps within the BIRP settings of care or the episodes of care.
For clients in the inpatient setting, length of EOC is calculated with the inclusion of any leave
and interruption days for reporting purposes. This includes weekend leave, transfers to acute
hospitals for procedures, and so on.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_endlength
REDCap field label Total length of EOC (in days)
Data element type System generated number ≥0
Identifier No
Condition Nil
Data element options REDCap code
N/A N/A
-
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 70
EOC end reason
Definition
The reason for the client’s episode of care end. Either: i) client is transferred to another setting of care within the same BIRP service (e.g.
from inpatient to community, community to TLU, and so forth), or
ii) client is discharged from all settings of care within the BIRP service.
The movements (transfers) of clients within a service should not be confused with incoming referrals to the service as a whole. Transfers refer to clients who are transferred between various teams in the same BIRP service. Note Clients in the inpatient setting of care are not considered to be discharged from the BIRP service when their rehabilitation is suspended for a short period of time (for example, to go on weekend leave, or if they are transferred to acute hospital for a procedure), when the intention is for the client to return to the inpatient rehabilitation setting. For extended periods of leave (i.e. >28 days), it is at the clinician’s discretion to decide if the period of absence constitutes a discharge and subsequent readmission. The decision is based on the time spent away from the inpatient ward, any changes to the patient’s functional status and any changes to the goals and objectives of the client’s rehabilitation plan.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_dc
REDCap field label Reason for EOC completion
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Transferred to other BIRP setting within this service
0
Discharged from this BIRP service 1
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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 71
EOC transfer setting of care
Definition