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NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset Brain Injury Rehabilitation Minimum Dataset Data Dictionary NSW Brain Injury Rehabilitation Directorate

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  • NSW Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Minimum Dataset

    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

    Level 4, 67 Albert Avenue

    Chatswood NSW 2067

    PO Box 699 Chatswood NSW 2057

    T +61 2 9464 4666 | F +61 2 9464 4728

    E [email protected] | www.aci.health.nsw.gov.au

    SHPN (ACI) 190386, ISBN 978-1-76081-214-0.

    Produced by: Brain Injury Rehabilitation Directorate, Agency for Clinical Innovation.

    Further copies of this publication can be obtained from

    the Agency for Clinical Innovation website at www.aci.health.nsw.gov.au

    Disclaimer: Content within this publication was accurate at the time of publication. This work is copyright. It may be

    reproduced in whole or part for study or training purposes subject to the inclusion of an acknowledgment of the source.

    It may not be reproduced for commercial usage or sale. Reproduction for purposes other than those indicated above,

    requires written permission from the Agency for Clinical Innovation.

    Version: 3.0 Trim: ACI/D19/3082

    Date Amended: July 2019

    © Agency for Clinical Innovation 2019

    The Agency for Clinical Innovation (ACI) works with clinicians, consumers and managers to design and

    promote better healthcare for NSW. It does this by:

    service redesign and evaluation – applying redesign methodology to assist healthcare providers and

    consumers to review and improve the quality, effectiveness and efficiency

    of services

    specialist advice on healthcare innovation – advising on the development, evaluation and adoption of

    healthcare innovations from optimal use through to disinvestment

    initiatives including guidelines and models of care – developing a range of evidence-based healthcare

    improvement initiatives to benefit the NSW health system

    implementation support – working with ACI Networks, consumers and healthcare providers to assist

    delivery of healthcare innovations into practice across metropolitan and rural NSW

    knowledge sharing – partnering with healthcare providers to support collaboration, learning capability

    and knowledge sharing on healthcare innovation and improvement

    continuous capability building – working with healthcare providers to build capability

    in redesign, project management and change management through the Centre for Healthcare

    Redesign.

    ACI Clinical Networks, Taskforces and Institutes provide a unique forum for people to collaborate across

    clinical specialties and regional and service boundaries to develop successful healthcare innovations.

    A priority for the ACI is identifying unwarranted variation in clinical practice and working in partnership

    with healthcare providers to develop mechanisms to improve clinical practice

    and patient care.

    www.aci.health.nsw.gov.au

    file:///C:/Users/accounts/AppData/Roaming/Microsoft/Word/www.aci.health.nsw.gov.auhttp://www.aci.health.nsw.gov.au/

  • 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 =

  • 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

  • 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

  • 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