NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset Brain Injury Rehabilitation Minimum Dataset Data Dictionary NSW Brain Injury Rehabilitation Directorate
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset
Brain Injury Rehabilitation
Minimum Dataset Data Dictionary
NSW Brain Injury Rehabilitation Directorate
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset i
AGENCY FOR CLINICAL INNOVATION
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Produced by: Brain Injury Rehabilitation Directorate, Agency for Clinical Innovation.
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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
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healthcare innovations from optimal use through to disinvestment
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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
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.
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
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.
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
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.
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)
- - -
Illawarra Brain Injury Service (IBIS)
- - -
Liverpool BIRU (LBIRU)* - -
Mid North Coast BIRS (MNC BIRS)†
- - -
New England BIRS (NEBIRS)
- -
Mid-West BIRP (MWBIRP)
- -
Northern BIRS (NBIRS)
- - - -
Paediatric BIRT – Newcastle (PBIRT)‡ - - -
Royal Rehab BIRS‡ - - -
Southern Area BIS (SABIS)
- -
Sydney Children’s Hospital Network – Randwick‡
- - -
Sydney Children’s Hospital Network – Westmead*
- - -
South West BIRS (SWBIRS)
- -
Westmead BIRS (WBIRS)
- - -
* Use of own database † Consisting of Coffs Harbour and Port Macquarie branches ‡ No database
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.
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
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).
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
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
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
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
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
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
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
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
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
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
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
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
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 18
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.
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 19
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.
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
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
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
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
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
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
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.
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.
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
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
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
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
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 = <24 hours(0) OR pta_range = 1-7 days(1) OR pta_range = 8-28 days(2) OR pta_range = 29-90 days(3) OR pta_range = 91-183 days(4))
Data element options REDCap code
N/A N/A
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 36
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.
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 <8yrs(2)
Data element options REDCap code
Mild 0
Moderate 1
Severe 2
Unable to estimate 9999
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 <8yrs(2)
Data element options REDCap code
No 0
Yes 1
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
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
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
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
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
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.
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
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
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
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 51
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.
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
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
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
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.
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
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 58
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
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 59
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
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.
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
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
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.
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.
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
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 71
EOC transfer setting of care
Definition
If the client is being transferred to another setting of care within the same BIRP service, the setting of care where they will start their next EOC is specified.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_transferto
REDCap field label Setting of care client is being transferred to
Data element type Multiple choice
Identifier No
Condition If eoc_dc = Transferred to other BIRP setting within this service(0)
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
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 72
EOC accommodation (end)
Definition
The usual residential accommodation captured at the end of an EOC, or where the client will sleep the night after they finish the EOC. These fields are modified slightly from the National Health Data Dictionary.9
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_postaccom
REDCap field label The client’s usual residential accommodation type at the end of the 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_postaccom_other) to specify accommodation if selected ‘other’ option.
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 73
EOC living situation (end)
Definition
The living situation of the person at the end of the EOC, or who they will live with when they complete the EOC. Multiple entries are allowed in this field.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_ postlivingsit
REDCap field label Living situation at the end of the EOC
Data element type Multiple choice
Identifier No
Condition
If eoc_postaccom = Private residence(0) OR if eoc_postaccom = Residential aged care services(2) OR if eoc_postaccom = Domestic-scale supported living facility(5) OR if eoc_postaccom = Boarding, rooming house orhostel(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_postlivingsit_other) to specify support level if selected ‘other’ option.
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 74
EOC support level (end)
Definition
The support level received by the person at the end of the EOC.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_postsupport
REDCap field label What is the client’s level of support at the end of the 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 75
EOC support hours (end)
Definition
If the client was dependent on others at the end 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 Scale11
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name eoc_ postsupporthrs
REDCap field label Specify the support level each support person provides to the client, at the end of the EOC
Data element type Multiple choice
Identifier No
Condition
If eoc_postsupport = Dependent (1 person)(2) OR eoc_postsupport = Dependent (2 people)(3) OR eoc_postsupport = 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 76
Discharge reason
Definition
When all EOCs have been completed, the reason for discharge is specified in terms of whether the treatment program was completed or not. Incomplete treatment programs refer to those that were ceased prior to the planned discharge date or before rehabilitation plans were completed/goals of rehabilitation achieved.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_reason
REDCap field label Reason for discharge from BIRP service
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
Treatment program completed 0
Treatment program incomplete 1
Section 8: Discharge details
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 77
Discharge incomplete reason
Definition
The reason why the treatment program was incomplete.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_incomplete
REDCap field label Reasons for incomplete program
Data element type Multiple choice
Identifier No
Condition If dc_reason = Treatment program incomplete(1)
Data element options REDCap code
Absconded or failed to attend 0
Client declined services 1
Died 2
Mental health issues 3
Drug and alcohol issues 4
Moved location 5
Other 6
Unknown 9999
Note: Includes a free-text ‘other’ option (data element name: dc_incomplete_other) to specify reason for incomplete program if selected ‘other’ option.
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 78
Cause of death
Definition
If the reason for an incomplete program was due to client mortality, the cause of death is specified in free text format.
REDCap specifics
REDCap instrument name mortality_details
REDCap data element name deceased_cause
REDCap field label Cause of death
Data element type Text/string
Identifier No
Condition If dc_reason = Treatment program incomplete(1) AND dc_incomplete = Died(2)
Data element options REDCap code
N/A N/A
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 79
Discharge additional services required
Definition
Whether or not the client was referred to any services post discharge. This includes community based services, other BIRP units, private or public services.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_servicesyn
REDCap field label Was client referred to any services for follow-up post discharge?
Data element type Multiple choice (multiple responses)
Identifier No
Condition Nil
Data element options REDCap code
No 0
Yes 1
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 80
Discharge additional services specific
Definition
The specific services that the client was referred on to, regardless of whether it is known the client followed up with the referrals or not. Multiple options can be selected for this field.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_services
REDCap field label What services was the client referred to?
Data element type Multiple choice
Identifier No
Condition If dc_servicesyn = Yes(1)
Data element options REDCap code
Referred to other BIRP unit 0
BIRP medical clinic 1
Other inpatient rehab 2
Private rehab services 6
Mental health services 3
Drug and alcohol services 4
Legal services 5
Education assistance (incl. teacher aide, tutor) 7
Child support services 8
Private case management services 9
NDIS funded services 10
Other 11
Note: Includes a free-text ‘other’ option (data element name: dc_services_other) to specify services if selected ‘other’ option.
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 81
Discharge BIRP unit
Definition
If client was referred on to another BIRP service, that BIRP service is specified.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_services_birp
REDCap field label Which BIRP service was client referred too?
Data element type Multiple choice
Identifier No
Condition If dc_servicesyn = Yes(1) AND dc_services = Referred to other BIRP unit(0)
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
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 82
Discharge employment status
Definition
The person’s employment status in binary format at the time of discharge from the service, with employment defined as being in competitive paid work. If the client is on official paid or unpaid leave (e.g. annual, sick), this is to be entered as being in employment. This does not include verbal or unofficial agreement regarding potential future employment.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_emp_yn
REDCap field label Was client working at time of discharge from the service?
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
No 0
Yes 1
Unknown 9999
Section 9: Discharge education
or employment
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 83
Discharge employment mode
Definition
If the person was working at the time of discharge from the service, 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 classifications.6
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_emp_status
REDCap field label If working, was it full or part time
Data element type Multiple choice
Identifier No
Condition If dc_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
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 84
Discharge job title
Definition
The person’s job title if employed at the time of discharge from the BIRP service, entered as free text. This is then used to classify jobs into occupation categories for reporting purposes.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_jobtitle
REDCap field label If working, what was their job title
Data element type Text/string
Identifier No
Condition If dc_emp_yn = Yes(1)
Data element options REDCap code
N/A N/A
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 85
Discharge unemployment status
Definition
The person’s main activity status at time of discharge 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 referral_admission_discharge_details
REDCap data element name dc_emp_status_2
REDCap field label If not working, what was their activity status
Data element type Text/string
Identifier No
Condition If dc_emp_yn = No(0)
Data element options REDCap code
N/A N/A
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 86
Discharge 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 or college, or university.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_edu_status
REDCap field label Was client studying at time of discharge
Data element type Multiple choice
Identifier No
Condition Nil
Data element options REDCap code
No 0
Yes 1
Unknown 9999
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 87
Discharge study type
Definition
The specific type of study the person was engaging in at the time of discharge from the service.
REDCap specifics
REDCap instrument name referral_admission_discharge_details
REDCap data element name dc_edu_type
REDCap field label Study type at time of discharge
Data element type Multiple choice
Identifier No
Condition If dc_edu_status = Yes(1)
Data element options REDCap code
School student 0
TAFE or college (includes apprenticeship) 1
University 2
Other 3
Unknown 9999
Note: Includes a free-text ‘other’ option (data element name: dc_edu_type_other) to specify status if selected ‘other’ option.
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 88
FIM
Definition
The Functional Independence Measure (FIM) instrument is an internationally used clinician rated outcome measure used in assessing the severity of disability and to track changes in functional ability.12 The FIM is completed for clients in the inpatient setting as part of Australian Rehabilitation Outcomes Center requirements, at admission and discharge (and if not yet discharged, at 12 monthly intervals).
Instrument specifics
No. of items 18
Item level scoring 7 point ordinal scale
Autoscore Yes, system generated
Subscales Motor (13 items) Cognition (7 items) Total
Section 10: Outcome measures
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 89
MPAI-4
Definition
The Mayo-Portland Adaptability Inventory (MPAI-4) is an ABI specific clinician rated outcome measure of sequelae following an ABI.13 It encompasses assessments of physical, cognitive, behavioural, emotional and social problems as well as social reintegration. The MPAI-4 is completed for clients in the community and TLU settings, at admission and discharge (and if not yet discharged, at 12 monthly intervals).
Instrument specifics
No. of items 35
Item level scoring 5 point ordinal scale
Autoscore Yes, system generated
Subscales
Ability index (12 items) Adjustment index (12 items) Participation index (8 items) Total score
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 90
PROMIS-29
Definition
The Patient Reported Outcomes Measurement Information System v2 (PROMIS-29 Profile v2.1) is a client (or carer, as proxy) rated instrument used to capture their perspective about their physical, mental, emotional health and wellbeing.14 The PROMIS-29 was selected to align with The NSW ACI Patient Reported Measures Program. The PROMIS-29 is completed for clients in the community and TLU settings, at admission and discharge (and if not yet discharged, at 12 monthly intervals). These time periods align with the completion of the clinician rated measure MPAI-4.
Instrument specifics
No. of items 29
Item level scoring 5 point ordinal scale
Autoscore Yes, system generated
Subscales
Depression (4 items) Anxiety (4 items) Physical function (4 items) Pain interference (4 items) Pain severity (1 item) Fatigue (4 items) Sleep disturbance (4 items) Ability to participate in social roles and activities (4 items)
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 91
Appendices
Appendix 1.1: Full list of codes for data element: language_spoken3
Data element options REDCap code
Gaelic (Scotland) 1101
Irish 1102
Welsh 1103
Celtic, nec‡‡ 1199
English 1201
German 1301
Letzeburgish 1302
Yiddish 1303
Dutch 1401
Frisian 1402
Afrikaans 1403
Danish 1501
Icelandic 1502
Norwegian 1503
Swedish 1504
Scandinavian, nec 1599
Estonian 1601
Finnish 1602
Finnish and Related Languages, nec 1699
French 2101
Greek 2201
Catalan 2301
Portuguese 2302
Spanish 2303
Iberian Romance, nec 2399
Italian 2401
Maltese 2501
Basque 2901
Latin 2902
Other Southern European Languages, nec 2999
Latvian 3101
Lithuanian 3102
‡‡ Not elsewhere classified
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 92
Hungarian 3301
Belorussian 3401
Russian 3402
Ukrainian 3403
Bosnian 3501
Bulgarian 3502
Croatian 3503
Macedonian 3504
Serbian 3505
Slovene 3506
Serbo-Croatian/Yugoslavian, so described 3507
Czech 3601
Polish 3602
Slovak 3603
Czechoslovakian, so described 3604
Albanian 3901
Aromunian (Macedo-Romanian) 3903
Romanian 3904
Romany 3905
Other Eastern European Languages, nec 3999
Kurdish 4101
Pashto 4102
Balochi 4104
Dari 4105
Persian (excluding Dari) 4106
Hazaraghi 4107
Iranic, nec 4199
Arabic 4202
Hebrew 4204
Assyrian Neo-Aramaic 4206
Chaldean Neo-Aramaic 4207
Mandaean (Mandaic) 4208
Middle Eastern Semitic Languages, nec 4299
Turkish 4301
Azeri 4302
Tatar 4303
Turkmen 4304
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 93
Uygur 4305
Uzbek 4306
Turkic, nec 4399
Armenian 4901
Georgian 4902
Other Southwest and Central Asian Languages, nec 4999
Kannada 5101
Malayalam 5102
Tamil 5103
Telugu 5104
Tulu 5105
Dravidian, nec 5199
Bengali 5201
Gujarati 5202
Hindi 5203
Konkani 5204
Marathi 5205
Nepali 5206
Punjabi 5207
Sindhi 5208
Sinhalese 5211
Urdu 5212
Assamese 5213
Dhivehi 5214
Kashmiri 5215
Oriya 5216
Fijian Hindustani 5217
Indo-Aryan, nec 5299
Other Southern Asian Languages 5999
Burmese 6101
Chin Haka 6102
Karen 6103
Rohingya 6104
Zomi 6105
Burmese and Related Languages, nec 6199
Hmong 6201
Hmong-Mien, nec 6299
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 94
Khmer 6301
Vietnamese 6302
Mon 6303
Mon-Khmer, nec 6399
Lao 6401
Thai 6402
Tai, nec 6499
Bisaya 6501
Cebuano 6502
IIokano 6503
Indonesian 6504
Malay 6505
Tetum 6507
Timorese 6508
Tagalog 6511
Filipino 6512
Acehnese 6513
Balinese 6514
Bikol 6515
Iban 6516
Ilonggo (Hiligaynon) 6517
Javanese 6518
Pampangan 6521
Southeast Asian Austronesian Languages, nec 6599
Other Southeast Asian Languages 6999
Cantonese 7101
Hakka 7102
Mandarin 7104
Wu 7106
Min Nan 7107
Chinese, nec 7199
Japanese 7201
Korean 7301
Tibetan 7901
Mongolian 7902
Other Eastern Asian Languages, nec 7999
Anindilyakwa 8101
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 95
Maung 8111
Ngan'gikurunggurr 8113
Nunggubuyu 8114
Rembarrnga 8115
Tiwi 8117
Alawa 8121
Dalabon 8122
Gudanji 8123
Iwaidja 8127
Jaminjung 8128
Jawoyn 8131
Jingulu 8132
Kunbarlang 8133
Larrakiya 8136
Malak Malak 8137
Mangarrayi 8138
Maringarr 8141
Marra 8142
Marrithiyel 8143
Matngala 8144
Murrinh Patha 8146
Na-kara 8147
Ndjebbana (Gunavidji) 8148
Ngalakgan 8151
Ngaliwurru 8152
Nungali 8153
Wambaya 8154
Wardaman 8155
Amurdak 8156
Garrwa 8157
Kuwema 8158
Marramaninyshi 8161
Ngandi 8162
Waanyi 8163
Wagiman 8164
Yanyuwa 8165
Marridan (Maridan) 8166
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 96
Gundjeihmi 8171
Kune 8172
Kuninjku 8173
Kunwinjku 8174
Mayali 8175
Kunwinjkuan, nec 8179
Burarra 8181
Gun-nartpa 8182
Gurr-goni 8183
Burarran, nec 8189
Arnhem Land and Daly River Region Languages, nec 8199
Galpu 8211
Golumala 8212
Wangurri 8213
Dhangu, nec 8219
Dhalwangu 8221
Djarrwark 8222
Dhay'yi, nec 8229
Djambarrpuyngu 8231
Djapu 8232
Daatiwuy 8233
Marrangu 8234
Liyagalawumirr 8235
Liyagawumirr 8236
Dhuwal, nec 8239
Gumatj 8242
Gupapuyngu 8243
Guyamirrilili 8244
Manggalili 8246
Wubulkarra 8247
Dhuwala, nec 8249
Wurlaki 8251
Djinang, nec 8259
Ganalbingu 8261
Djinba 8262
Manyjalpingu 8263
Djinba, nec 8269
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 97
Ritharrngu 8271
Wagilak 8272
Yakuy, nec 8279
Nhangu 8281
Yan-nhangu 8282
Nhangu, nec 8289
Dhuwaya 8291
Djangu 8292
Madarrpa 8293
Warramiri 8294
Rirratjingu 8295
Other Yolngu Matha, nec 8299
Kuku Yalanji 8301
Guugu Yimidhirr 8302
Kuuku-Ya'u 8303
Wik Mungkan 8304
Djabugay 8305
Dyirbal 8306
Girramay 8307
Koko-Bera 8308
Kuuk Thayorre 8311
Lamalama 8312
Yidiny 8313
Wik Ngathan 8314
Alngith 8315
Kugu Muminh 8316
Morrobalama 8317
Thaynakwith 8318
Yupangathi 8321
Tjungundji 8322
Cape York Peninsula Languages, nec 8399
Kalaw Kawaw Ya/Kalaw Lagaw Ya 8401
Meriam Mir 8402
Yumplatok (Torres Strait Creole) 8403
Bilinarra 8504
Gurindji 8505
Gurindji Kriol 8506
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 98
Jaru 8507
Light Warlpiri 8508
Malngin 8511
Mudburra 8512
Ngardi 8514
Ngarinyman 8515
Walmajarri 8516
Wanyjirra 8517
Warlmanpa 8518
Warlpiri 8521
Warumungu 8522
Northern Desert Fringe Area Languages, nec 8599
Alyawarr 8603
Kaytetye 8606
Antekerrepenh 8607
Central Anmatyerr 8611
Eastern Anmatyerr 8612
Anmatyerr, nec 8619
Eastern Arrernte 8621
Western Arrarnta 8622
Arrernte, nec 8629
Arandic, nec 8699
Antikarinya 8703
Kartujarra 8704
Kukatha 8705
Kukatja 8706
Luritja 8707
Manyjilyjarra 8708
Martu Wangka 8711
Ngaanyatjarra 8712
Pintupi 8713
Pitjantjatjara 8714
Wangkajunga 8715
Wangkatha 8716
Warnman 8717
Yankunytjatjara 8718
Yulparija 8721
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 99
Tjupany 8722
Western Desert Languages, nec 8799
Bardi 8801
Bunuba 8802
Gooniyandi 8803
Miriwoong 8804
Ngarinyin 8805
Nyikina 8806
Worla 8807
Worrorra 8808
Wunambal 8811
Yawuru 8812
Gambera 8813
Jawi 8814
Kija 8815
Kimberley Area Languages, nec 8899
Adnymathanha 8901
Arabana 8902
Bandjalang 8903
Banyjima 8904
Batjala 8905
Bidjara 8906
Dhanggatti 8907
Diyari 8908
Gamilaraay 8911
Garuwali 8913
Githabul 8914
Gumbaynggir 8915
Kanai 8916
Karajarri 8917
Kariyarra 8918
Kaurna 8921
Kayardild 8922
Kriol 8924
Lardil 8925
Mangala 8926
Muruwari 8927
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 100
Narungga 8928
Ngarluma 8931
Ngarrindjeri 8932
Nyamal 8933
Nyangumarta 8934
Nyungar 8935
Paakantyi 8936
Palyku/Nyiyaparli 8937
Wajarri 8938
Wiradjuri 8941
Yindjibarndi 8943
Yinhawangka 8944
Yorta Yorta 8945
Baanbay 8946
Badimaya 8947
Barababaraba 8948
Dadi Dadi 8951
Dharawal 8952
Djabwurrung 8953
Gudjal 8954
Keerray-Woorroong 8955
Ladji Ladji 8956
Mirning 8957
Ngatjumaya 8958
Waluwarra 8961
Wangkangurru 8962
Wargamay 8963
Wergaia 8964
Yugambeh 8965
Aboriginal English, so described 8998
Other Australian Indigenous Languages, nec 8999
American Languages 9101
Acholi 9201
Akan 9203
Mauritian Creole 9205
Oromo 9206
Shona 9207
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 101
Somali 9208
Swahili 9211
Yoruba 9212
Zulu 9213
Amharic 9214
Bemba 9215
Dinka 9216
Ewe 9217
Ga 9218
Harari 9221
Hausa 9222
Igbo 9223
Kikuyu 9224
Krio 9225
Luganda 9226
Luo 9227
Ndebele 9228
Nuer 9231
Nyanja (Chichewa) 9232
Shilluk 9233
Tigre 9234
Tigrinya 9235
Tswana 9236
Xhosa 9237
Seychelles Creole 9238
Anuak 9241
Bari 9242
Bassa 9243
Dan (Gio-Dan) 9244
Fulfulde 9245
Kinyarwanda (Rwanda) 9246
Kirundi (Rundi) 9247
Kpelle 9248
Krahn 9251
Liberian (Liberian English) 9252
Loma (Lorma) 9253
Lumun (Kuku Lumun) 9254
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 102
Madi 9255
Mandinka 9256
Mann 9257
Moro (Nuba Moro) 9258
Themne 9261
Lingala 9262
African Languages, nec 9299
Fijian 9301
Gilbertese 9302
Maori (Cook Island) 9303
Maori (New Zealand) 9304
Nauruan 9306
Niue 9307
Samoan 9308
Tongan 9311
Rotuman 9312
Tokelauan 9313
Tuvaluan 9314
Yapese 9315
Pacific Austronesian Languages, nec 9399
Bislama 9402
Hawaiian English 9403
Norf'k-Pitcairn 9404
Solomon Islands Pijin 9405
Oceanian Pidgins and Creoles, nec 9499
Kiwai 9502
Motu (HiriMotu) 9503
Tok Pisin (Neomelanesian) 9504
Papua New Guinea Languages, nec 9599
Invented Languages 9601
Auslan 9701
Key Word Sign Australia 9702
Sign Languages, nec 9799
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 103
Appendix 1.2: Full list of codes for data element: cob4
Data element options REDCap code
Australia 1101
Norfolk Island 1102
Australian External Territories, nec 1199
New Zealand 1201
New Caledonia 1301
Papua New Guinea 1302
Solomon Islands 1303
Vanuatu 1304
Guam 1401
Kiribati 1402
Marshall Islands 1403
Micronesia, Federated States of 1404
Nauru 1405
Northern Mariana Islands 1406
Palau 1407
Cook Islands 1501
Fiji 1502
French Polynesia 1503
Niue 1504
Samoa 1505
Samoa, American 1506
Tokelau 1507
Tonga 1508
Tuvalu 1511
Wallis and Futuna 1512
Pitcairn Islands 1513
Polynesia (excludes Hawaii), nec 1599
Adelie Land (France) 1601
Argentinian Antarctic Territory 1602
Australian Antarctic Territory 1603
British Antarctic Territory 1604
Chilean Antarctic Territory 1605
Queen Maud Land (Norway) 1606
Ross Dependency (New Zealand) 1607
England 2102
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 104
Isle of Man 2103
Northern Ireland 2104
Scotland 2105
Wales 2106
Guernsey 2107
Jersey 2108
Ireland 2201
Austria 2301
Belgium 2302
France 2303
Germany 2304
Liechtenstein 2305
Luxembourg 2306
Monaco 2307
Netherlands 2308
Switzerland 2311
Denmark 2401
Faroe Islands 2402
Finland 2403
Greenland 2404
Iceland 2405
Norway 2406
Sweden 2407
Aland Islands 2408
Andorra 3101
Gibraltar 3102
Holy See 3103
Italy 3104
Malta 3105
Portugal 3106
San Marino 3107
Spain 3108
Albania 3201
Bosnia and Herzegovina 3202
Bulgaria 3203
Croatia 3204
Cyprus 3205
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 105
The former Yugoslav Republic of Macedonia 3206
Greece 3207
Moldova 3208
Romania 3211
Slovenia 3212
Montenegro 3214
Serbia 3215
Kosovo 3216
Belarus 3301
Czechia 3302
Estonia 3303
Hungary 3304
Latvia 3305
Lithuania 3306
Poland 3307
Russian Federation 3308
Slovakia 3311
Ukraine 3312
Algeria 4101
Egypt 4102
Libya 4103
Morocco 4104
Sudan 4105
Tunisia 4106
Western Sahara 4107
Spanish North Africa 4108
South Sudan 4111
Bahrain 4201
Gaza Strip and West Bank 4202
Iran 4203
Iraq 4204
Israel 4205
Jordan 4206
Kuwait 4207
Lebanon 4208
Oman 4211
Qatar 4212
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 106
Saudi Arabia 4213
Syria 4214
Turkey 4215
United Arab Emirates 4216
Yemen 4217
Myanmar 5101
Cambodia 5102
Laos 5103
Thailand 5104
Vietnam 5105
Brunei Darussalam 5201
Indonesia 5202
Malaysia 5203
Philippines 5204
Singapore 5205
Timor-Leste 5206
China (excludes SARs and Taiwan) 6101
Hong Kong (SAR of China) 6102
Macau (SAR of China) 6103
Mongolia 6104
Taiwan 6105
Japan 6201
Korea, Democratic People's Republic of (North) 6202
Korea, Republic of (South) 6203
Bangladesh 7101
Bhutan 7102
India 7103
Maldives 7104
Nepal 7105
Pakistan 7106
Sri Lanka 7107
Afghanistan 7201
Armenia 7202
Azerbaijan 7203
Georgia 7204
Kazakhstan 7205
Kyrgyzstan 7206
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 107
Tajikistan 7207
Turkmenistan 7208
Uzbekistan 7211
Bermuda 8101
Canada 8102
St Pierre and Miquelon 8103
United States of America 8104
Argentina 8201
Bolivia 8202
Brazil 8203
Chile 8204
Colombia 8205
Ecuador 8206
Falkland Islands 8207
French Guiana 8208
Guyana 8211
Paraguay 8212
Peru 8213
Suriname 8214
Uruguay 8215
Venezuela 8216
South America, nec 8299
Belize 8301
Costa Rica 8302
El Salvador 8303
Guatemala 8304
Honduras 8305
Mexico 8306
Nicaragua 8307
Panama 8308
Anguilla 8401
Antigua and Barbuda 8402
Aruba 8403
Bahamas 8404
Barbados 8405
Cayman Islands 8406
Cuba 8407
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 108
Dominica 8408
Dominican Republic 8411
Grenada 8412
Guadeloupe 8413
Haiti 8414
Jamaica 8415
Martinique 8416
Montserrat 8417
Puerto Rico 8421
St Kitts and Nevis 8422
St Lucia 8423
St Vincent and the Grenadines 8424
Trinidad and Tobago 8425
Turks and Caicos Islands 8426
Virgin Islands, British 8427
Virgin Islands, United States 8428
St Barthelemy 8431
St Martin (French part) 8432
Bonaire, Sint Eustatius and Saba 8433
Curacao 8434
Sint Maarten (Dutch part) 8435
Benin 9101
Burkina Faso 9102
Cameroon 9103
Cabo Verde 9104
Central African Republic 9105
Chad 9106
Congo, Republic of 9107
Congo, Democratic Republic of 9108
Cote d'Ivoire 9111
Equatorial Guinea 9112
Gabon 9113
Gambia 9114
Ghana 9115
Guinea 9116
Guinea-Bissau 9117
Liberia 9118
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 109
Mali 9121
Mauritania 9122
Niger 9123
Nigeria 9124
Sao Tome and Principe 9125
Senegal 9126
Sierra Leone 9127
Togo 9128
Angola 9201
Botswana 9202
Burundi 9203
Comoros 9204
Djibouti 9205
Eritrea 9206
Ethiopia 9207
Kenya 9208
Lesotho 9211
Madagascar 9212
Malawi 9213
Mauritius 9214
Mayotte 9215
Mozambique 9216
Namibia 9217
Reunion 9218
Rwanda 9221
St Helena 9222
Seychelles 9223
Somalia 9224
South Africa 9225
Eswatini 9226
Tanzania 9227
Uganda 9228
Zambia 9231
Zimbabwe 9232
Southern and East Africa, nec 9299
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 110
Appendix 1.3: Full list of codes for data element: ref_unit_hosp
Data element options REDCap code
Aesthetic Day Surgery 0
Albury Wodonga Health [Albury Campus] 1
Albury Wodonga Private Hospital 2
Allowah Presbyterian Children's Hospital 3
Armidale Hospital 4
Armidale Private Hospital 5
Auburn Hospital 6
Ballina Day Surgery 7
Ballina Hospital 8
Balmain Hospital 9
Balranald Multi Purpose Service 10
Bankstown Lidcombe Hospital 11
Baradine Multi Purpose Service 12
Barham Hospital 13
Baringa Private Hospital 14
Barraba Multi Purpose Service 15
Batemans Bay Hospital 16
Bathurst Health Service 17
Bathurst Private Hospital 18
Batlow/Adelong Multi Purpose Service 19
Bega Valley Private Hospital 20
Bellinger River District Hospital 21
Belmont Hospital 22
Berkeley Vale Private Hospital 23
Berrigan Multi Purpose Service 24
Bingara Multi Purpose Service 25
Blacktown Hospital 26
Blayney Multi Purpose Service 27
Blue Mountains Hospital 28
Boggabri Multi Purpose Service 29
Bombala Multi Purpose Service 30
Bonalbo Hospital 31
Boorowa Multi Purpose Service 32
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 111
Bourke Multi Purpose Service 33
Bourke Street Health Service 34
Bowral Hospital 35
Braeside Hospital 36
Braidwood Multi Purpose Service 37
Brewarrina Multi Purpose Service 38
Brisbane Waters Private Hospital 39
Broken Hill Hospital 40
Bulahdelah Hospital 41
Bulli Hospital 42
Byron Central Hospital 43
Calvary Health Care Riverina 44
Calvary Hospital 45
Calvary Mater Newcastle Hospital 46
Camden Hospital 47
Campbelltown Hospital 48
Campbelltown Private Hospital 49
Canowindra Hospital 50
Canterbury Hospital 51
Casino Hospital 52
Castle Hill Day Surgery 53
Castlecrag Private Hospital 54
Central Coast Day Hospital 55
Centre for Digestive Diseases 56
Cessnock Hospital 57
Chatswood Private Hospital 58
Cobar Health Service 59
Coffs Day Hospital 60
Coffs Harbour Hospital 61
Coledale Hospital 62
Collarenebri Multi Purpose Service 63
Concord Hospital 64
Condobolin Health Service 65
Coolah Multi Purpose Service 66
Coolamon Multi Purpose Service 67
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 112
Coolenberg Day Surgery 68
Cooma Hospital 69
Coonabarabran Health Service 70
Coonamble Multi Purpose Service 71
Cootamundra Hospital 72
Coraki Hospital 73
Coral Tree Family Centre 74
Corowa Hospital 75
Cowra Health Service 76
Crookwell Hospital 77
Crows Nest Day Surgery 78
Cudal Health Service 79
Culcairn Multi Purpose Service 80
Cumberland Hospital 81
Dalcross Adventist Hospital 82
David Berry Hospital 83
Dee Why Endoscopy Unit 84
Delegate Multi Purpose Service 85
Deniliquin Hospital 86
Denman Multi Purpose Service 87
Diagnostic Endoscopy Centre 88
Dorrigo Multi Purpose Service 89
Dubbo Hospital 90
Dudley-Orange Private Hospital 91
Dunedoo Multi Purpose Service 92
Dungog Hospital 93
Eastern Heart Clinic 94
Epping Surgery Centre 95
Eugowra Multipurpose Service 96
Fairfield Hospital 97
Figtree Private Hospital 98
Finley Hospital 99
Forster Private Hospital 100
Gilgandra Multi Purpose Service 101
Glen Innes Hospital 102
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 113
Gloucester Hospital 103
Goodooga Health Service 104
Gosford Hospital 105
Goulburn Hospital 106
Gower Wilson Multi Purpose Service 107
Grafton Base Hospital 108
Greenwich Hospital 109
Grenfell Multi Purpose Service 110
Griffith Base Hospital 111
Gulargambone Multi Purpose Service 112
Gulgong Multi Purpose Service 113
Gundagai Hospital 114
Gunnedah Hospital 115
Guyra Multi Purpose Service 116
Hawkesbury Hospital 117
Hay Hospital 118
Henty Multi Purpose Service 119
Hillston Hospital 120
Holbrook Hospital 121
Hornsby Ku-ring-gai Hospital 122
Hunter New England Mater Mental Health Service 123
Hunter Valley Private Hospital 124
Hunters Hill Private Hospital 125
Hurstville Private 126
Illawarra Mental Health Services 127
Inverell Hospital 128
Ivanhoe Hospital 129
Jerilderie Multi Purpose Service 130
John Hunter Hospital 131
Junee Multi Purpose Service 132
Justice Health Services 133
Kareena Private Hospital 134
Karitane Mothercraft Society 135
Kempsey Hospital 136
Kenmore Hospital 137
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 114
Kiama Hospital 138
Kingsway Day Surgery 139
Kurri Kurri Hospital 140
Kyogle Multi Purpose Service 141
Lachlan Health Service - Forbes 142
Lachlan Health Service - Parkes 143
Lady Davidson Private Hospital 144
Lake Cargelligo Multi Purpose Service 145
Lake Macquarie Private Hospital 146
Lawrence Hargrave Private Hospital 147
Leeton Hospital 148
Lightning Ridge Multi Purpose Service 149
Lismore Hospital 150
Lithgow Hospital 151
Liverpool Day Surgery 152
Liverpool Eye Surgery 153
Liverpool Hospital 154
Lockhart Hospital 155
Long Jetty Health Care Centre 156
Lourdes Hospital Dubbo 157
Macksville Hospital 158
Maclean Hospital 159
Macquarie Hospital 160
Macquarie University Hospital 161
Maitland Hospital 162
Manilla Hospital 163
Manly Hospital 164
Manning Hospital 165
Mater Hospital Sydney 166
Menindee Health Service 167
Mercy Care Hospital - Albury 168
Mercy Care Hospital - Young 169
Merriwa Multi Purpose Service 170
MetroRehab Hospital 171
Metwest Surgical 172
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 115
Milton Ulladulla Hospital 173
Miranda Eye Surgical Centre 174
Mogo Day Surgery 175
Molong Health Service 176
Mona Vale Hospital 177
Moree Hospital 178
Morisset Hospital 179
Moruya Hospital 180
Mosman Private Hospital 181
Mount Druitt Hospital 182
Mount Wilga Private Hospital 183
Mudgee Health Service 184
Murrumburrah-Harden Hospital 185
Murwillumbah Hospital 186
Muswellbrook Hospital 187
Narrabri Hospital 188
Narrandera Hospital 189
Narromine Health Service 190
Nepean Hospital 191
Nepean Private Hospital 192
Neringah Hospital 193
Newcastle Private Hospital 194
Nimbin Multi Purpose Service 195
North Shore Private Hospital 196
Northside Clinic 197
Northside Cremorne Clinic 198
Northside Macarthur Clinic 199
Northside West Clinic 200
Norwest Private Hospital 201
Nowra Private Hospital 202
Nyngan Multi Purpose Service 203
Oberon Multi Purpose Service 204
Orange Day Surgery Centre 205
Orange Health Service 206
Pambula Hospital 207
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 116
Peak Hill Multipurpose Service 208
Pennant Hills Day Endoscopy Centre 209
Perfect Vision Day Surgery 210
Port Kembla Hospital 211
Port Macquarie Hospital 212
Port Macquarie Private Hospital 213
Portland Hospital 214
Prince of Wales Hospital 215
Prince of Wales Private Hospital 216
Queanbeyan Hospital 217
Quirindi Hospital 218
Radiation Oncology Institute - Gosford 219
Radiation Oncology Institute - The Sydney Adventist Hospital Wahroonga 220
Riverina Day Surgery 221
Riverlands Drug and Alcohol Centre 222
Royal Hospital for Women 223
Royal North Shore Hospital 224
Royal Prince Alfred Hospital 225
Royal Prince Alfred Institute of Rheumatology & Orthopaedics 226
Royal Rehabilitation Hospital 227
Ryde Hospital 228
Rylstone Multi Purpose Service 229
Sacred Heart Hospice 230
San Day Surgery Hornsby 231
Scone Hospital 232
Shellharbour Hospital 233
Shoalhaven Hospital 234
Singleton Hospital 235
South East Regional Hospital 236
South Pacific Private 237
Southern Highlands Private Hospital 238
Springwood Hospital 239
St George Hospital NSW 240
St George Private Hospital 241
St John of God Burwood Hospital 242
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 117
St John of God Richmond Hospital 243
St Joseph's Hospital 244
St Luke's Hospital 245
St Vincents Hospital 246
St Vincents Private Hospital [Lismore] 247
St Vincent's Private Sydney 248
Strathfield Private Hospital 249
Sutherland Heart Clinic 250
Sutherland Hospital 251
Sydney Adventist Hospital 252
Sydney Children's Hospital 253
Sydney Day Surgery - Prince Alfred 254
Sydney Dental Hospital 255
Sydney Hospital / Sydney Eye Hospital 256
Sydney Southwest Private Hospital 257
Tamara Private Hospital 258
Tamworth Hospital 259
Temora Hospital 260
Tenterfield Hospital 261
The Border Cancer Hospital 262
The Children's Hospital at Westmead 263
The Hills Clinic Kellyville 264
The Hills Private Hospital 265
The Skin & Cancer Foundation Australia 266
The Sydney Clinic 267
The Sydney Private Hospital Incorporating the NSW Eye Centre 268
The Tweed Hospital 269
Thomas Walker Hospital 270
Tibooburra Hospital 271
Tingha Multi Purpose Service 272
Tocumwal Hospital 273
Tomaree Hospital 274
Tottenham Multipurpose Service 275
Trangie Multi Purpose Service 276
Tresillian Family Care Centre, Canterbury 277
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 118
Tresillian Family Care Centre, Kingswood 278
Trundle Multi Purpose Health Service 279
Tullamore Multi Purpose Health Service 280
Tumbarumba Multi Purpose Service 281
Tumut Hospital 282
Tweed Day Surgery 283
Ulladulla Endoscopy and Medical Centre 284
Urana Multi Purpose Service 285
Urbenville Multi Purpose Service 286
Vegetable Creek Multi Purpose Service Emmaville 287
Vision Day Surgery Chatswood 288
Vision Day Surgery Hurstville 289
Wagga Endoscopy Centre 290
Wagga Wagga Rural Referral Hospital 291
Walcha Multi Purpose Service 292
Walgett Multipurpose Service 293
War Memorial Hospital 294
Waratah Private Hospital 295
Warialda Multi Purpose Service 296
Warners Bay Private Hospital 297
Warren Multi Purpose Service 298
Wauchope Hospital 299
Wee Waa Hospital 300
Wellington Health Service 301
Wentworth Hospital 302
Wentworth Psychiatric Services 303
Werris Creek Hospital 304
Wesley Hospital Ashfield 305
Wesley Hospital Kogarah 306
Western Sydney Oncology & Infusion Centre 307
Westmead Hospital 308
Westmead Private Hospital 309
Westmead Rehabilitation Hospital 310
Wilcannia Multi Purpose Service 311
Wilson Memorial Community Hospital, Murrurundi 312
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 119
Wingham Hospital 313
Wollongong Day Surgery 314
Wollongong Hospital 315
Wollongong Private Hospital 316
Wolper Jewish Hospital 317
Woy Woy Hospital 318
Wyalong Hospital 319
Wyong Hospital 320
Yass Hospital 321
Young Hospital 322
Canberra Hospital 323
Alfred Health Acquired Brain Injury Rehabilitation Centre 324
Royal Talbot Rehabilitation 325
Royal Melbourne Hospital 326
Victorian Paediatric Rehabilitation Service 327
Albury Wodonga Health / Wodonga Campus 328
Wangaratta Hospital 329
Epworth Hospital 330
Alfred Hospital 331
Royal Children's Hospital 332
Monash Medical Centre 333
Other 334
Princess Alexandra Hospital 335
Princess Alexandra Brain Injury Rehabilitation Unit (BIRU) 336
Gold Coast University Hospital 337
John Hunter Children's Hospital 338
Unknown 9999
NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset 120
References
1 NSW Ministry of Health. Admitted Patient Data Collection. Sydney, Australia: NSW Ministry of
Health. 2016.Retrieved from http://www.cherel.org.au/data-dictionaries#section1
2 Australian Bureau of Statistics. Census of Population and Housing Cat no. 2901.0. Canberra,
Australia: Commonwealth of Australia, ABS; 2016.
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no. 1267.0. Canberra, Australia: Commonwealth of Australia, ABS; 2016.
4 Australian Bureau of Statistics. Standard Australian Classification of Countries (SACC) Cat no.
1269.0. Canberra, Australia: Commonwealth of Australia, ABS; 2016.
5 Khan F, Baguley IJ, Cameron ID. 4: Rehabilitation after traumatic brain injury. Medical Journal
of Australia. 2003;178(6):290-97.
6 Australian Bureau of Statistics. Labour Statistics: Concepts, Sources and Methods cat no.
6102.0.55.001. Canberra: Australia: Commonwealth of Australia, ABS; 2013.
7 Australian Bureau of Statistics. ANZSCO - Australian and New Zealand Standard
Classification of Occupations cat no.1220.0.30.001 v1.2. Canberra, Australia: Commonwealth
of Australia, ABS; 2013.
8 Australian Institute of Health and Welfare. National Health Data Dictionary. Version 16 Cat.
no. HWI 119. Canberra: AIHW; 2012.
9 Stroke Foundation. AuSDAT National Stroke Data Dictionary. Melbourne, Australia; 2019
10 American Brain Injury Consortium. TBI-impact guidelines Common Data Elements. USA; 2011
11 Tate RL. Manual for the Care and Needs Scale (CANS). Unpublished manuscript. John
Walsh Centre for Rehabilitation Research, University of Sydney; 2017. Updated version 2.
12 Wright J. The FIM(TM). The Center for Outcome Measurement in Brain Injury.
Available from:http://www.tbims.org/combi/FIM
13 Malec J.. The Mayo Portland Adaptability Inventory. The Center for Outcome Measurement in
Brain Injury. 2005. Available from: http://www.tbims.org/combi/mpai
14 Cella D, Riley W, Stone A, et al. The Patient-Reported Outcomes Measurement Information
System (PROMIS) developed and tested its first wave of adult self-reported health outcome
item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179–1194.
doi:10.1016/j.jclinepi.2010.04.011