Stroke Core Data Standards - ndc.scot.nhs.uk Core Data Standards.pdf · Stroke Core Data Standards 6 Once approved the Stroke Core Data Standards will be freely and widely available

For reference only – Do Not Use For more information contact: [email protected]

Stroke Core Data Standards

June 2006

National Clinical Dataset Development Programme (NCDDP) Support Team Information Services Area 54E Gyle Square 1 South Gyle Crescent Edinburgh EH12 9EB Tel: 0131 275 7053 Email to: [email protected] Website: www.clinicaldatasets.scot.nhs.uk/

Stroke Core Data Standards 2

Overview & Background.................................................................................................5 Overview ..................................................................................................................... 5 Stroke Core Data Standards ....................................................................................... 5 Background to NCDDP ............................................................................................... 6 Generic Data Standards.............................................................................................. 6 Clinical Terminology.................................................................................................... 7 Date Recording ........................................................................................................... 7

Patient Identification and Demographics .....................................................................9 Care Episode Administration Details........................................................................... 9 General Medical Practitioner Details........................................................................... 9 Associated Person Details ........................................................................................ 10 Associated Professional Details................................................................................ 11

Socio-Environmental Details .......................................................................................12 Sector of Care........................................................................................................... 12

Basic Health Measurements ........................................................................................14

Lifestyle Risk Factors ...................................................................................................15

Personal History............................................................................................................16 Personal History of Specific Conditions {Stroke} ...................................................... 16 Personal History (Conditions) {Stroke}...................................................................... 17 Personal History of Specific Interventions {Stroke}................................................... 19 Personal History (Interventions)................................................................................ 20

Family History ...............................................................................................................22 Family History of Specific Condition (First Degree Relative) {Stroke}....................... 22 Family History (First Degree Relative) ...................................................................... 23 Relationship (First Degree Relative) ......................................................................... 24 Family History Age at First Onset (First Degree Relative) ........................................ 25 Family History Age at Death (First Degree Relative) ................................................ 25

Medication .....................................................................................................................26

Functional Assessments..............................................................................................27 Barthel Index - Bowel Status..................................................................................... 27 Barthel Index - Bladder Status .................................................................................. 27 Barthel Index - Grooming.......................................................................................... 28 Barthel Index – Toilet Use......................................................................................... 28 Barthel Index – Feeding............................................................................................ 29 Barthel Index – Transfer............................................................................................ 29 Barthel Index - Mobility.............................................................................................. 30 Barthel Index – Dressing........................................................................................... 30 Barthel Index – Stairs................................................................................................ 30 Barthel Index – Bathing............................................................................................. 31 Modified Rankin Score .............................................................................................. 31


Patient Symptoms.........................................................................................................33 Main Presenting Complaint(s) {Stroke} ..................................................................... 33

Diagnosis Details ..........................................................................................................35 Diagnosis Neurovascular .......................................................................................... 35 Most Valid Basis of Diagnosis {Stroke} ..................................................................... 36 Anatomical Site of Lesion {Stroke}............................................................................ 38 Circulatory Area Affected {Stroke} ............................................................................ 38

Neurological Assessments ..........................................................................................40 Conscious Level........................................................................................................ 40 Glasgow Coma Scale - Eye Opening........................................................................ 41 Glasgow Coma Scale - Verbal Response................................................................. 41 Glasgow Coma Scale - Best Motor Response.......................................................... 42 Cognitive Assessment Status ................................................................................... 43 Cognitive Assessment Results.................................................................................. 43 Eye Movements Status ............................................................................................. 44 Eye Movement Disorder............................................................................................ 44 Visual Field Status .................................................................................................... 45 Visual Field Defect .................................................................................................... 46 Visuospatial Perception Status ................................................................................. 46 Aphasia Status.......................................................................................................... 47 Dysarthria Status....................................................................................................... 48 Muscle Power (Facial) Assessment Result............................................................... 48 Muscle Power (Limb) Assessment Result................................................................. 49 Finger / Nose Test Results........................................................................................ 50 Hand Coordination Result ......................................................................................... 51 Handedness.............................................................................................................. 51 Heel / Shin Test Results............................................................................................ 52 Sensory Perception Results (Light Touch)................................................................ 53 Sensory Perception Results (Pin Prick) .................................................................... 53 Sensory Perception Results (Temperature).............................................................. 54 Sensory Perception Results (Joint Position Sense).................................................. 55 Sensory Perception Results (Vibration Sense) ......................................................... 56

Stroke Scale Scores......................................................................................................58 National Institutes of Health (NIH) Stroke Scale Score............................................. 58 Scandinavian Stroke Scale Score............................................................................. 58 European Stroke Scale Score................................................................................... 59 Canadian Neurological Scale Score ......................................................................... 59

Investigations................................................................................................................60 Haematology Table ................................................................................................... 60 Biochemistry Table.................................................................................................... 60 Other Investigations Table ........................................................................................ 61 Radiological Investigations........................................................................................ 62 Computerised Tomography Scan (Brain) Results..................................................... 62 Computerised Tomography Scan (Brain) Abnormal Results {Stroke} ...................... 63 Computerised Tomography Scan (Brain) Type {Stroke}........................................... 64 Magnetic Resonance Imaging Scan (Brain) Results................................................. 64 Magnetic Resonance Imaging Scan (Brain) Abnormal Results {Stroke} .................. 65 Magnetic Resonance Imaging Scan (Brain) Type {Stroke}....................................... 66


Brain Imaging Consistent with Current Cerebrovascular Event ................................ 67 Angiography.............................................................................................................. 67 Imaging of Blood Vessels of Brain (Techniques) ...................................................... 67 Imaging of Blood Vessels of Brain (Results)............................................................. 68 Nature of Blood Vessel Abnormality ......................................................................... 69 Vessel Stenosis......................................................................................................... 70 Imaging of Blood Vessels - Arterial Stenosis ............................................................ 70 Imaging of Blood Vessels - Stenosis Percentage Range (%) ................................... 71 Imaging of Blood Vessels - Method of Calculating Degree of Stenosis of Internal Carotid Artery ............................................................................................................ 71

Cardiac Investigations..................................................................................................72 Electrocardiography Results ..................................................................................... 72 Electrocardiography Abnormal Results {Stroke} ....................................................... 73 Electrocardiography (Ambulatory) Monitoring Results {Stroke} ............................... 73 Electrocardiography (Ambulatory) Monitoring Period ............................................... 74 Electrocardiography (Ambulatory) Monitoring Type.................................................. 75 Echocardiogram Results ........................................................................................... 75 Echocardiogram Abnormal Results {Stroke}............................................................ 76

Outcomes.......................................................................................................................78

Audit and Research ......................................................................................................78 Clinical Trial Status ................................................................................................... 78 Clinical Trial Participant {Stroke}............................................................................... 79 Clinical Trial Name {Stroke} ...................................................................................... 80 Date Completed Trial Intervention ............................................................................ 80

Appendix 1 - Working Group .......................................................................................82

Appendix 2 - Consultation Distribution List ...............................................................83


Overview & Background

Overview The National Advisory Committee for Stroke (NACS) commissioned the development of Stroke Core Data Standards for NHS Scotland to ensure common information standards across all clinical settings in which people are undergoing treatment for Stroke. A Stroke Core Data Standards Clinical Working Group was established in April 2005 to progress this work, supported by the National Clinical Dataset Development Programme (NCDDP) Support Team based in Information Services Division (ISD).

The Stroke Core Data Standards will:

Define common data items recommended for collection in a wide variety of clinical settings

Support the exchange of patient information between healthcare providers Support the consistent recording of patient information throughout NHS

Scotland

It is envisaged that the Stroke Core Data Standards will be recorded within clinical systems. The data standards contain data items from Generic Data Standards, which have previously been developed through the NCDDP and are freely available in Clinical Datasets section of the web based Health and Social Care Data Dictionary. We are now seeking feedback from the wider clinical community in order to ensure that these data standards are fit for purpose. We invite all interested organisations and individuals to take part in this consultation by completing the attached Consultation Response Form and then returning it to [email protected]. Comments on all or any part of the document are welcome. Some background information on the NCDDP and the Stroke Core Data Standards development can be found below. If you have any further queries, please go to our website or contact [email protected].

Stroke Core Data Standards The membership of the Stroke Core Working Group is shown in Appendix 1. This group agreed the inclusion of individual data items using the following criteria:

1. Is the data item required by all those involved in the care of patients suffering from stroke?

2. Will it prevent unnecessary duplication of recording? Once consultation is complete the Stroke Core Data Standards will be submitted to the NCDDP Programme Board for formal approval as a national standard.


Once approved the Stroke Core Data Standards will be freely and widely available through publication in the Health and Social Care Data Dictionary. Where possible the data standards are UK compatible. It is expected that the Stroke Core Data Standards will be implemented within existing and emerging national clinical information systems and commercially procured national products, as well as being available to commercial developers to ensure the ability of their systems to support national information requirements. Note: The Stroke Inpatient Dataset is being consulted upon in conjunction with the Stroke Core Data Standards. These two pieces of work are complementary and we would suggest that the two are reviewed as such.

Background to NCDDP The National Clinical Dataset Development Programme (NCDDP) supports clinicians to develop sets of interoperable national datasets to facilitate the implementation of the integrated care records across NHS Scotland. These standards will: • Support direct patient care, by reflecting current best practice guidance • Facilitate effective communication between health care professionals • Improve data quality and support secondary data requirements where possible

including data to support clinical governance • Be freely and widely available through publication in the web based Health &

Social Care Data Dictionary • Incorporate agreed national clinical definitions and implement national

terminology • Be UK compatible where possible The Chief Medical Officer established the programme in 2003 to support clinicians developing national clinical data standards, initially to support the national priority areas. These standards are an essential element of the Electronic Health Record, a central aim of the National e-Health Strategy. More information can be found on our website.

Generic Data Standards Data standards which are relevant to all patients and are used across specialties, disciplines and settings have already been developed by wider Generic Data Standards clinical working groups and approved as national data standards for NHS Scotland. The Stroke Core Data Standards working group identified several generic data items as appropriate for inclusion in their standards. These data items are indicated by a ‘G’ next to the data item name and definition, which are listed in this document for information. The full detail of these existing standards are published on the web based Health and Social Care Data Dictionary or by contacting [email protected].


Clinical Terminology The strategic standard for clinical terminology in NHS Scotland is SNOMED-Clinical Terms. This means that over the next few years, clinical information systems will progress to record clinical data using this international standard. The NCDDP Support Team will commence development of recommended SNOMED CT specifications as part of the data standards and datasets it supports during 2006.

Date Recording It is good record-keeping practice always to identify the date of recording of any clinical information. It is expected that all clinical information systems should include ‘date stamping’ as standard functionality; therefore the Stroke Core Data Standards do not deal with this issue. In many clinical situations, the date of an event, investigation, etc. is required for clinical purposes and should be visible to the health care professional. This date may not be the same as the date on which the data are entered onto the system. In these instances the system must allow the health care professional to enter whichever date is appropriate. These issues must be addressed during system specification and development. The date format for storage and management within a system should conform to the 1Government Data Standards Catalogue format: CCYY-MM-DD. However, this does not preclude entry or display of data on the user interface using the traditional DD-MM-CCYY format. An example of a date & time in correct format is: 1997-07-16T19:20 +01:00 (CCYY-MM-DDThh:mmTZD) It is recommended that a time should always be recorded with the appropriate date and not on its own, however it may not be necessary to display the date along with the time. This is of particular importance where any calculations or analyses are likely to be performed. Automated times recorded by IT systems should include all elements of the time, i.e. hours, minutes and seconds, and are expected to be actual. Where times are entered manually, it is likely that only the hours and minutes will be required, although in some circumstances only hours may be required. Time, or any element of the time (hours, minutes or seconds) may be actual or estimated. In some circumstances only an actual time may be acceptable, whilst in others an estimated time may be allowed. In the latter situation, it may be necessary to identify whether the time recorded is actual or estimated. Times identified as actual may be used in calculations and analyses. Times marked as estimated should be treated with caution and the implications of undertaking any calculations or analyses should be considered in the particular context within which the time is recorded or to be made subsequent use of. Where an estimated time is allowed, the appropriate degree of verification detail required should be decided, again dependent on the context in which it is recorded and how the time is to be used. 1Government Data Standards Catalogue 1. All times must be expressed in the 24 hour clock format, e.g. one minute past midnight is 00:01:00. 2. Values of any element less than 10 should be entered with a zero in the first position. 3. All times for UK transactions/events will be assumed to be GMT.


4. Systems should record whether the time is Coordinated Universal Time or British Summer Time in the “Time zone designator”. This will allow time elapsed to be calculated correctly, for example for A&E waiting times.


Patient Identification and Demographics Data Item Definition CHI Number G The Community Health Index (CHI) is a population register,

which is used in Scotland for health care purposes. The CHI number uniquely identifies a person on the index.

Structured Name G An ordered sequence of person name elements such as title, forename(s) and family name.

Address (BS7666) G A collection of data describing the addressing of locations. UK Telephone number G A number, including any exchange or location code, at

which a person or organisation can be contacted in the UK by telephonic means.

Internet Email Address G The string of characters that identifies an addressee's post box on the Internet.

Person Birth Date G The date on which a person was born or is officially deemed to have been born, as recorded on the Birth Certificate.

Person Current Gender G A statement by the individual about the gender they currently identify themselves to be (i.e. self-assigned).

Person Sex at Birth G This is a factual statement, as far as is known, about the phenotypic (biological) sex of the person at birth

Ethnic Group (Self Assigned) G

A statement made by the service user about their current ethnic group

Person Marital Status G An indicator to identify the legal marital status of a person G Note: The above data items have already been approved as part of the Generic Data Standards and are available in the Health & Social Care Data Dictionary.

Care Episode Administration Details Data Item Definition Location Code G This is the reference number of any building or set of

buildings where events pertinent to NHS Scotland take place. Locations include hospitals, health centres, GP surgeries, clinics, NHS board offices, nursing homes, schools and patient/client’s home.

G Note: The above data items have already been approved as part of the Generic Data Standards and are available in the Health & Social Care Data Dictionary.

General Medical Practitioner Details Data Item Definition Registered GP Practice Code G

General Medical Practitioners provide general medical services to the population either in partnership with other GMPs or on a single-handed basis. The term GP practice covers both partnerships and single-handed practices. Each GP practice in Scotland is identified by a unique GP practice code. The practice code is a four-digit code plus a check digit with ranges of codes allocated to each Health


Board. (Scottish Morbidity Record – NHS Information Services)

Address (BS7666) G

A collection of data describing the addressing of locations.

GP General Medical Council Number G

The GMC (General Medical Council) number is the personal identification number issued to each doctor in the UK by the General Medical Council.

Structured Name G - GP Title - GP Family Name - GP Given name

An ordered sequence of person name elements such as title, forename(s) and family name.

Specified General Medical Practitioner Role G

The function carried out by an individual GP in relation to the patient/client, who may or may not be within the patient/client’s registered practice.


UK Telephone Number G A number, including any exchange or location code, at which a person or organisation can be contacted in the UK by telephonic means.

General Practice Registration Status of Patient G

The registration status of the patient with the general practice from which they are receiving care.


Associated Person Details Data Item Definition Associated Person G People who have a significant involvement or relationship with

the client/patient (e.g. main carer, next of kin, key holder, emergency contact, etc). This includes professionals who are not involved in the care of the client/patient e.g. accountant, lawyer.

Structured Name G - Title - Surname/ Family Name - First Forename


Address (BS7666) G




Person Current Gender G A statement by the individual about the gender they currently identify themselves to be (i.e. self-assigned).

Person Birth Date G The date on which a person was born or is officially deemed to have been born, as recorded on the Birth Certificate.

Associated Person Role G A description of the particular involvement(s) with/ function(s) fulfilled by an associated person towards the client/ patient.

Associated Person Relationship to Client/ Patient G

The relationship of an Associated Person to the client/patient.

Start Date G The date on which a process or period of validity commences.


End Date G The date on which a process or period of validity terminates. G Note: The above data items have already been approved as part of the Generic Data Standards and are available in the Health & Social Care Data Dictionary.

Associated Professional Details Data Item Definition Associated Professional G Associated Professionals are those individuals who are involved

with the client/ patient in a professional capacity e.g. consultant, social worker, occupational therapist, etc.

Structured Name G - Title - Surname/ Family Name - First Forename


Address (BS7666) G




Associated Professional Identifier G

The unique identifier issued to all health and social care professionals by their professional regulatory body.

Associated Professional Group G

The recognised professional group to which the care professional belongs and in which they are employed.

Associated Professional Role G

Professionals are those individuals who are involved with the client/patient in a professional capacity (e.g. Consultant, Social Worker, Occupational Therapist etc). The particular role(s) carried out by each professional is (are) indicated by this data item.

Associated Professional Employing Organisation Name G

The organisation, body or agency, which employs the associated professional in relation to the role they are fulfilling with regard to a particular client/ patient. This is either the name by which the organisation wishes to be known, or the official name given to the organisation.

Associated Professional Employing Organisation Type G

The type of organisation, body or agency, which currently employs the associated professional in relation to the role they are fulfilling.



Socio-Environmental Details Data Item Definition Accommodation Type G The type of accommodation in which the person is

normally resident. Accessibility to Accommodation

*Generic – For Development

Lives With G An indicator to identify the person/ client’s domestic circumstances

Sector of Care For Consultation G Note: The above data items have already been approved as part of the Generic Data Standards and are available in the Health & Social Care Data Dictionary. *This item is undergoing development as part of the Generic Data Standards

Sector of Care Common name(s): Sector {Stroke} Definition: A record of the health care sector where the patient is receiving the specific aspect of care to which the record / part of record relates. Format: Characters Field length: 3 Codes and values: Code Value Sub-

code Sub-value Explanatory Text

01 Primary Care 02 Community Care Includes domiciliary care provided in the patient’s home.

In a secondary or tertiary care hospital setting. A Inpatient As a hospital inpatient – spending at least

one night in a hospital bed B Day case A day case is a patient who makes a

planned attendance at a hospital to a specialty for clinical care, sees a doctor or nurse (as the consultants representative) and requires the use of a bed or trolley in lieu of a bed. The patient is not expected to and does not remain overnight.

C Outpatient A hospital outpatients clinic

03 Acute Care

D Day hospital A day hospital is a hospital, or a specified area within a hospital, which provides services on a regular daytime basis for specific patient/client groups, for example, the elderly, mentally ill or learning disability. Services normally provided are assessment, rehabilitation, maintenance of function and clinical treatment


E Other Ambulatory

Patients seen for a short period time by doctor or nurse (as the consultants representative) in the hospital session, including ward attender.

98 Other 99 Not known


Basic Health Measurements Data Item Definition Height G Height in metres (to the nearest centimetre) - measured without shoes Weight G Weight in kilograms taken without shoes or outdoor clothing Body Mass Index G

Body Mass Index (BMI) = weight/height² (kg/m²)

Waist Circumference

Waist circumference measured half way between costal margin and iliac crest (cm).

Systolic Blood Pressure G

Systolic Blood Pressure measured using a technique and equipment approved by the British Hypertension Society

Diastolic Blood Pressure G

Diastolic Blood Pressure measured using a technique and equipment approved by the British Hypertension Society


Note: The above data item has already been approved and is available in the Health & Social Care Data Dictionary.


Lifestyle Risk Factors Data Item Definition Current Tobacco and Nicotine Consumption Status G

Tobacco consumption at date of contact including smoking, chewing and use of other nicotine substances.

Non-specialist Tobacco and Nicotine Consumption Advice G

Record of the tobacco and nicotine consumption advice given by a health care professional (who is not part of a Smoking Cessation Service).

Current Alcohol Drinking Status G

Record of the individual’s current alcohol consumption in relation to prevailing guidelines, with reference to any past excessive alcohol consumption

Non-specialist Alcohol Consumption Advice G

Record of the alcohol consumption advice given by a health care professional (who is not part of a specialist alcohol treatment service).

Current Physical Activity Status G

All movements in everyday life, including work, recreation, exercise, and sporting activities (World Health Organization definition of physical activity http://www.who.int/topics/physical_activity/en/).

Non-specialist Physical Activity Advice G

Record of the physical activity advice given by a health care professional (who is not a qualified health and fitness professional).

Non-specialist Dietary Advice

Record of the dietary advice given by a health care professional (who is not a qualified dietician).

Cigarettes Smoked Per Average Day

A record of the number of cigarettes the patient smokes per average day

Alcohol Intake Per Average Week

The amount of alcohol consumed by a patient, measured in units, per average week.

Driving Licence Type G The type of driving licence currently held by the client/patient G Note: The above data items have already been approved as part of the Generic Data Standards and are available in the Health & Social Care Data Dictionary.

These data items have already been approved and are available in the Health & Social Care Data Dictionary


Personal History Data Item Definition Personal History of Specific Conditions {Stroke}

For Consultation

Personal History (Conditions) {Stroke}

For Consultation

Personal History of Specific Interventions {Stroke}

For Consultation

Personal History (Interventions) For Consultation

Personal History of Specific Conditions {Stroke} Common name(s): Significant History Definition: A record of whether or not the patient has a personal history of specific conditions considered to be of relevance to a particular involvement with care services. Format: SNOMED Clinical Terms* Field length: minimum 18 Codes and values: * Code Value Explanatory Notes 00 None No known diagnosis of specified condition. SCT specific code(s)

SCT specific term(s) for presence of personal history of specific condition

Patient known to have had specific condition diagnosed.

99 Not known Sub data item: Verification level

0 Unverified 1 Verified

Related data items: Personal History (Conditions) {Stroke} Further Information: This data item is intended for use for those conditions where it is necessary to know whether or not the patient has a personal history of the condition, in other words documentation of the absence of a history of the condition is as important as documentation of its presence. For example, for patients with ischaemic heart disease it is important to document either the presence or the absence of asthma since the use of beta blockers is contraindicated in individuals with asthma. For these specific conditions, the clinician should actively gather the information required by patient history taking and reference to the patient’s health record, i.e. they should not rely upon passive derivation of this data item from the patient’s record. The structure of this data item should be repeated for each specific condition. Lists of specific conditions will be developed through specialty specific datasets.

Formatted: Bullets andNumbering

Deleted: Verified¶


Stroke specific conditions: Cerebrovascular disease: Stroke: Infarct

Stroke: Haemorrhagic Stroke: Unspecified Cerebral TIA Transient Monocular Blindness <24 hours Monocular Blindness >24 hours Subarachnoid haemorrhage

Cardiac conditions: Unstable Angina Stable Angina Pectoris Myocardial Infarction Cardiomyopathy Atrial Fibrillation

Atrial Flutter Heart Failure Valvular Disease

Other conditions: Peripheral Vascular Disease

Hypertension Hyperlipidaemia Diabetes Mellitus

Recording guidance: Systems must allow for recording of multiple occurrences of a specific condition, with associated date(s) of diagnosis. *In the future, this data item should be fully recorded used SNOMED Clinical Terms (SCT). As an interim measure, until a robust method of using SCT to code the absence of a specific personal history is agreed, the value ‘00’ should be recorded in the specific condition field. Only a SCT coded value in this field should be shared with other systems or used to derive the related data item ‘Personal History (Conditions)’.

Personal History (Conditions) {Stroke} Common names: Past History, Co-morbidities Definition: A record of any condition(s) the patient has previously had diagnosed, including any chronic diseases/ long-term conditions. Format: SNOMED Clinical Terms (SCT) Field length: minimum 18 Codes and values: SCT Term Explanatory Notes Chronic Kidney Disease CKD is defined as either kidney damage or

Glomerular Filtration Rate (GFR) <60mL/min/1.73m2 for ≥3 months. A chronic


condition is that which can be controlled, but not currently cured.

Chronic Lung Disease For example, COPD, pulmonary fibrosis. A chronic condition is that which can be controlled, but not currently cured.

Chronic Liver Disease For example cirrhosis. A chronic condition is that which can be controlled, but not currently cured.

Migraine Abnormal Thyroid Function For example, hyperthyroidism, hypothyroidism Chronic Neurological Disease Congenital Neurological Deficit Dementia Arthritis Psychological Disorder Includes depression, schizophrenia Gastrointestinal Bleeding Haematological Disorder Endocrine Disease Other, specify Attributes: May include any attributes or qualifiers available in the national standard clinical classifications and terminologies, namely ICD10, ICF, Read version 2 or SNOMED CT. For example: Laterality: Left, right, bilateral, midline

Severity: Mild, moderate, severe Chronicity: Acute, chronic, recurrent

Related data items: Personal History of Specific Conditions {Stroke} Further information: This data item records the presence of pre-existing conditions and diagnoses which have been made in the past. Drop-down lists of terms for common personal history conditions can be developed within the context of specific clinical data standards/ datasets. Recording guidance: Systems must allow for recording of multiple conditions. It may be appropriate to record associated date(s) of diagnosis. Personal history may be at least partially derived by IT systems from diagnoses recorded in the patient’s Electronic Health Record (EHR). It is recommended that IT systems incorporate a clinical terminology browser to facilitate recording of personal history. The browser should allow selection and display of clinical terms on the user interface whilst storing, managing and transferring such data by the corresponding clinical code. The recording of ‘other’ diagnoses should be facilitated by linking to a clinical terminology browser. Where systems do not yet use SCT, the appropriate SCT clinical term should be recorded and displayed with the relevant ICD10 code, ICF Grouping or Read version 2 code used for management within the IT system. In the future all conditions should be recorded using SNOMED CT terms and codes. Where an IT system is currently


unable to implement clinical terminology(ies) or classifications within its functionality, it may be possible to record personal history using free text. This is not recommended as a long-term option.

Personal History of Specific Interventions {Stroke} Common name(s): Significant past treatments, Significant past procedures Definition: A record of whether or not the patient has a personal history of specific interventions considered to be of relevance to a particular involvement with care services. This includes previous operations, procedures or other treatments. Format: SNOMED Clinical Terms* Field length: minimum 18 Codes and values: * Code Value Explanatory Notes 00 None Specified intervention not performed. SCT specific code(s)

SCT specific term(s) for presence of personal history of specific intervention

Patient known to have had specific intervention performed.

99 Not known Sub data item: Verification level


Related data items: Personal History (Interventions) Further Information: This data item is intended for use for those interventions where it is necessary to know whether or not the patient has a personal history of the intervention, in other words documentation of the absence of a history of the intervention is as important as documentation of its presence. For these specific interventions, the clinician should actively gather the information required by patient history taking and reference to the patient’s health record, i.e. they should not rely upon passive derivation of this data item from the patient’s record. The structure of this data item should be repeated for each specific intervention. Lists of specific interventions will be developed through specialty specific datasets. Stroke specific interventions: Thrombolysis (Including for stroke, myocardial infarction or peripheral arterial disease.) Cardiac Valve Repair / Replacement (Including replacement with tissue or mechanical valves) Coronary Intervention (Including percutaneous transluminal coronary angioplasty (PTCA) and coronary artery bypass grafting (CABG).)


Deleted: Verified¶


Carotid Intervention Recording guidance: Systems must allow for recording of multiple occurrences of a specific intervention, with associated date(s) of diagnosis. *In the future, this data item should be fully recorded used SNOMED Clinical Terms (SCT). As an interim measure, until a robust method of using SCT to code the absence of a specific personal history of intervention is agreed, the value ‘00’ should be recorded in the specific intervention field. Only a SCT coded value in this field should be shared with other systems or used to derive the related data item ‘Personal History (Interventions)’.

Personal History (Interventions) Common names: Past History of Interventions, Previous Interventions Definition: A record of any interventions the patient has previously had performed, including any previous operations, procedures or other treatments. Format: SNOMED Clinical Terms (SCT) Field length: minimum 18 Codes and values: See specific datasets Attributes: May include any attributes or qualifiers available in the national standard clinical classifications and terminologies, namely ICD10, ICF, OPCS v4.3, Read version 2 or SNOMED CT. For example: Laterality: Left, right, bilateral, midline Related data items: Personal History of Specific Interventions {Stroke} Further information: This data item records any interventions which have been performed in the past. Drop-down lists of terms for common personal history interventions can be developed within the context of specific clinical data standards/ datasets. Recording guidance: Systems must allow for recording of multiple interventions. It may be appropriate to record associated date(s) of intervention. Personal history of intervention may be at least partially derived by IT systems from interventions recorded in the patient’s Electronic Health Record (EHR). It is recommended that IT systems incorporate a clinical terminology browser to facilitate recording of personal history of intervention. The browser should allow selection and display of clinical terms on the user interface whilst storing, managing and transferring such data by the corresponding clinical code.


Where systems do not yet use SCT, the appropriate SCT clinical term should be recorded and displayed with the relevant OPCS v4.3 or Read version 2 code used for management within the IT system. In the future all interventions should be recorded using SNOMED CT terms and codes. Where an IT system is currently unable to implement clinical terminology(ies) or classifications within its functionality, it may be possible to record personal history of intervention using free text. This is not recommended as a long-term option.


Family History Data Item Definition Family History of Specific Condition (First Degree Relative) {Stroke}

For Consultation

Family History (First degree Relative)

For Consultation

Relationship (First Degree Relative)

For Consultation

Family History Age at First Onset (First Degree Relative)

For Consultation

Family History Age at Death (First Degree Relative)

For Consultation

Family History of Specific Condition (First Degree Relative) {Stroke} Common name(s): Family History Definition: A record of whether or not the patient has a family history in a first-degree relative of a specific condition considered to be of relevance to a particular involvement with care services. Format: SNOMED Clinical Terms* Field length: minimum 18 Codes and values: * Code Value Explanatory Notes 00 None No first-degree relative known to have specific condition. SCT specific code(s)

SCT specific term(s) for presence of family history of specific condition

At least one first-degree relative other than the patient known to have specific condition.

99 Not known Includes where patient is adopted and has no knowledge of the health status of their biological family.

Sub data item: Verification level


Related data item: Family History (First Degree Relative)

Relationship (First Degree Relative) Family History Age at First Onset (First Degree Relative) Family History Age at Death (First Degree Relative)

Further Information: A first degree relative can be defined as a parent, sibling or child.


Deleted: Verified¶


This data item is intended for use for those conditions where it is necessary to know whether or not the patient has a family history of a specific condition, in other words documentation of the absence of a family history of the condition is as important as documentation of its presence. For these specific conditions, the clinician should actively gather the information required by patient history taking and reference to the patient’s health record, i.e. they should not rely upon passive derivation of this data item from the patient’s record. The structure of this data item should be repeated for each specific condition. Lists of specific conditions will be developed through specialty specific datasets. Stroke specific family history conditions:

Stroke Coronary Heart Disease Hypertension Hyperlipidaemia Diabetes Migraine

Recording guidance: Systems must allow for recording of multiple occurrences of a specific family history in different first-degree relatives. *In the future, this data item should be fully recorded used SNOMED Clinical Terms (SCT). As an interim measure, until a robust method of using SCT to code the absence of a specific family history is agreed, the value ‘00’ should be recorded in the specific family history field. Only a SCT coded value in this field should be shared with other systems or used to derive the related data item ‘Family History.

Family History (First Degree Relative) Definition: A record of any condition(s) known to be present in at least one of the patient’s first-degree relatives. Format: SNOMED Clinical Terms (SCT) Field length: minimum 18 Codes and values: See specific datasets Attributes: May include any attributes or qualifiers available in the national standard clinical classifications and terminologies, namely ICD10, ICF, Read version 2 or SNOMED CT. For example: Laterality: Left, right, bilateral, midline

Severity: Mild, moderate, severe Chronicity: Acute, chronic, recurrent

Related data item: Family History of Specific Condition (First Degree Relative)

{Stroke} Relationship (First Degree Relative)


Family History Age at First Onset (First Degree Relative) Family History Age at Death (First Degree Relative)

Further information: A first degree relative can be defined as a parent, sibling or child. This data item records the presence of any conditions and diagnoses known to be diagnosed in at least one first-degree relative. Drop-down lists of terms for common family history conditions can be developed within the context of specific clinical data standards/ datasets. Where an IT system is currently unable to implement the appropriate clinical terminology(ies) within its functionality, it may be possible to record family history using free text. This is not recommended as a long-term option. Recording guidance: Systems must allow for recording of multiple conditions. It may be appropriate to record associated date(s) of diagnosis. It is recommended that IT systems incorporate a clinical terminology browser to facilitate recording of family history. The browser should allow selection and display of clinical terms on the user interface whilst storing, managing and transferring such data by the corresponding clinical code. Where systems do not yet use SCT, the appropriate SCT clinical term should be recorded and displayed with the relevant ICD10 code, ICF Grouping or Read version 2 code used for management within the IT system. In the future all family history should be recorded using SNOMED CT terms and codes. Where an IT system is currently unable to implement clinical terminology(ies) or classifications within its functionality, it may be possible to record family history using free text. This is not recommended as a long-term option.

Relationship (First Degree Relative) Definition: The relationship of a first degree relative to the patient. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 01 Father Biological father. 02 Mother Biological mother. 03 Sibling Includes full biological brother, full biological sister, half-biological

brother and half-biological sister. 04 Child Includes biological son or daughter.

Related data item: Family History of Specific Condition (First Degree Relative)

{Stroke} Family History (First Degree Relative) Family History Age at First Onset (First Degree Relative)


Family History Age at Death (First Degree Relative) Further information: A first degree relative can be defined as a parent, sibling or child. Recording guidance: Systems should allow for the recording of multiple options.

Family History Age at First Onset (First Degree Relative) Definition: The age of the First Degree Relative when first diagnosed with the specific condition. Format: Numeric Field length: 2 Codes and values: N/A Related data item: Family History of Specific Condition (First Degree Relative)

{Stroke} Family History (First Degree Relative) Relationship (First Degree Relative) Family History Age at Death (First Degree Relative)

Family History Age at Death (First Degree Relative) Definition: The age at time of death of the First Degree Relative diagnosed with the specific condition. Format: Numeric Field length: 3 Codes and values: N/A Related data item: Family History of Specific Condition (First Degree Relative)

{Stroke} Family History (First Degree Relative) Relationship (First Degree Relative) Family History Age at First Onset (First Degree Relative)


Medication Data item Definition Specific Medication Record G

A record of whether or not a specific medication was prescribed for an individual as recommended in specific clinical guidelines.

Reason Specific Medication Not Prescribed G

A record of the reason why a specific medication was not prescribed

G Note: The above data items have already been approved as part of the Generic Data Standards and are available in the Health & Social Care Data Dictionary. Stroke Relevant Medications: In relation to the data item ‘Specific Medication Record’, the specific drugs/ classes of drugs considered of relevance to stroke include:

• Aspirin • Warfarin • Antiplatelet drugs including Dipyridamole, Clopidogrel • Blood pressure lowering drugs, including ACE Inhibitors, Thiazide Diuretics,

Angiotensin II Receptor Blockers • Lipid lowering drugs, including Statins, Fibrates


Functional Assessments Data Item Definition Activities of Daily Living Status

A record of the extent to which the patient is independent in activities of daily living (ADL).

Barthel Index – Bowel Status For Consultation Barthel Index – Bladder Status For Consultation Barthel Index – Grooming For Consultation Barthel Index – Toilet Use For Consultation Barthel Index - Feeding For Consultation Barthel Index - Transfer For Consultation Barthel Index – Mobility For Consultation Barthel Index - Dressing For Consultation Barthel Index – Stairs For Consultation Barthel Index - Bathing For Consultation Modified Rankin Score For Consultation

Note: The above data item has already been approved and is available in the Health & Social Care Data Dictionary

Barthel Index - Bowel Status Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of the patient’s bowel status measured using the Barthel Index. Format: Characters Field length: 2 Codes and values: Codes Values 01 Incontinent 02 Occasional Accident 03 Continent Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Barthel Index - Bladder Status Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of the patient’s bladder status measured using the Barthel Index. Format: Characters


Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Incontinent Or catheterised and unable to manage alone. 02 Occasional Accident 03 Continent Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Barthel Index - Grooming Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of whether the patient needs help with personal care measured using the Barthel Index. Format: Characters Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Needs help with personal care 02 Independent Face/hair/teeth/shaving. Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Barthel Index – Toilet Use Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of whether the patient needs help to use the toilet measured using the Barthel Index. Format: Characters Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Dependent 02 Needs some help, but can do something alone 03 Independent On and off, dressing, wiping.


Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Barthel Index – Feeding Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of whether the patient needs help to feed him/herself measured using the Barthel Index. Format: Characters Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Unable 02 Needs help Cutting, spreading butter etc or requires modified diet. 03 Independent Further information: This item refers to the patient’s capability to feed him/herself and should not be used to record swallowing capability. The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Barthel Index – Transfer Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of whether the patient needs help to transfer him/herself measured using the Barthel Index. Format: Characters Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Unable No sitting balance. 02 Major help, can sit One or two people, physical. 03 Minor help Verbal or physical. 04 Independent Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.


Barthel Index - Mobility Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of whether the patient needs help to be mobile measured using the Barthel Index. Format: Characters Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Immobile or more than 50 yards 02 Wheelchair independent Including corners, more than 50 yards. 03 Walks with help of one person Verbal or physical more than 50 yards. 04 Independent May use any aid, more than 50 yards. Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Barthel Index – Dressing Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of whether the patient needs help to dress him/herself measured using the Barthel Index. Format: Characters Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Dependent 02 Needs help But can do about half unaided. 03 Independent Including buttons, zips, laces etc. Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Barthel Index – Stairs Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of whether the patient needs help to use stairs measured using the Barthel Index.


Format: Characters Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Unable 02 Needs help Verbal, physical, carrying aid. 03 Independent Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Barthel Index – Bathing Main source of standard: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Used with permission. Definition: A record of whether the patient needs help to bathe him/herself measured using the Barthel Index. Format: Characters Field length: 2 Codes and values: Codes Values Explanatory Notes 01 Dependent 02 Independent Or in shower. Further information: The Barthel index is a measure of activities of daily living (ADL) and records indicators of independence and degree of disability.

Modified Rankin Score Main source of standard: Rankin J. “Cerebral vascular accidents in patients over the age of 60.” Scott Med J 1957;2:200-15. Common name(s): mRs, Oxford Handicap Scale or Score (OHS) Definition: A record of the functional outcome after an event based upon the extent of any disability or disabling symptoms experienced by the patient following the event, measured using the Modified Rankin Score tool. Format: Numeric Field length: 1


Codes and values: Code Value Explanatory Notes 0 No symptoms No symptoms at all. Score of 0 1 No significant disabling symptoms No significant disability despite symptoms;

able to carry out all usual duties and activities. Score of 1

2 Slight disability Unable to carry out all previous activities but able to look after their own affairs without assistance. Score of 2

3 Moderate disability Requiring some help but able to walk without assistance. Score of 3

4 Moderate / Severe disability Unable to walk without assistance and unable to attend to own bodily needs without assistance. Score of 4

5 Severe disability Bedridden, incontinent and requiring constant nursing care and attention. Score of 5

6 Dead Score of 6 Attributes:

Verified: Patient

Relative Professional Further information: The Modified Rankin Scale measures functional outcome after stroke. Only those symptoms arising since the stroke should be considered.


Patient Symptoms Data item Definition Date and Time of Symptom Onset


Main Presenting Complaint(s) {Stroke}

For Consultation

Duration of Main Presenting Complaint(s)

*Generic – For development in the forthcoming Generic Medications dataset

*This item is undergoing development as part of the Generic Data Standards

Main Presenting Complaint(s) {Stroke} Common name(s): Main Presenting Symptom(s) Definition: The patient's stated reason(s) for seeking care (or as stated by the patient's representative, such as parent, legal guardian, or paramedic) Format: Characters (In the future all diagnoses, health problems and issues should be recorded using SNOMED Clinical Terms and codes.) Field length: 3 Codes and values: Code Value Sub-code Sub-value Explanatory Notes 00 None 01 Weakness of face 02 Difficulty using arm 03 Difficulty using hand 04 Difficulty using leg

A In face B In arm C In hand

05 Altered sensation

D In leg 06 Slurred speech Dysarthria 07 Communication

problems For example, aphasia, dyslexia, dysgraphia

08 Swallowing problems Dysphagia 09 Double vision Diplopia 10 Visual field loss For example hemianopia, quadrantanopia,

monocular loss. 11 Dizzy Including light headedness and rotational vertigo 12 Difficulty walking For example, unsteadiness 13 Loss of consciousness 14 Headache 15 Vomiting 98 Other – specify For example, confusion or memory problems

which may sometimes indicate focal lesion.

Deleted: The National Cancer Datasets developed by the Cancer Networks supported by Information Services??? – Think these are 2001 ¶

Deleted: ¶

Deleted: ¶

Deleted: Description

Deleted: -


Attributes: Laterality:

Left Right Bilateral

Continuance:

Transitory (Symptom completely resolved between onset and assessment) Recurrent (Symptom has completely resolved then re-occurred at least once between onset and assessment)

Persistent (Symptom not fully resolved at the time of assessment) Related data items: Duration of Main Presenting Complaint(s)

Recording guidance: Users may wish to augment code 98 – “Other – specify” with a free text field for recording other Main Presenting Symptoms. IT systems should allow for recording of multiple options.

Deleted: ¶

Deleted:

Deleted: ¶

Deleted: ¶

Deleted: ¶

Deleted: ¶Further information:¶Relevant presenting symptoms are detailed elsewhere.


Diagnosis Details Data item Definition Diagnosis Neurovascular For Consultation Most Valid Basis of Diagnosis {Stroke}

For Consultation

Anatomical Site of Lesion {Stroke}

For Consultation

Circulatory Area Affected {Stroke}

For Consultation

Diagnosis Neurovascular Definition: A record of the patient’s diagnosis when presenting with neurovascular symptoms. Format: Characters (In the future all diagnoses, health problems and issues should be recorded using SNOMED Clinical Terms and codes.) Field length: 3 + ICD10 code (3 + 4 characters) Codes and values: Code Value Sub-code Sub-value Explanatory Notes 00 No diagnosis 01 Acute

Cerebrovascular Event

Defined as clinical syndrome, of presumed vascular origin, typified by rapidly developing signs of focal or global disturbance of cerebral functions which are ongoing at an assessment within 24 hours of onset. No equivalent in ICD10. A clinical syndrome, of presumed vascular origin, typified by rapidly developing signs of focal or global disturbance of cerebral functions lasting more than 24 hours or leading to death. (World Health Organisation 1978 (Ref National Clinical Guideline for Stroke RCP London)) A Ischaemic B Haemorrhagic

02 Stroke

C Unspecified A clinical syndrome characterised by an acute loss of focal cerebral or ocular function with symptoms lasting less than 24 hours. It is thought to be due to inadequate cerebral or ocular blood supply as a result of low blood flow, thrombosis or embolism associated with diseases of the blood vessels, heart or blood (Hankey & Warlow 1994 (Ref Ref National Clinical Guideline for Stroke RCP London)) A Cerebral

03 Transient Ischaemic Attack

B Eye Monocular 04 Monocular visual

loss for >24 hours Presumed to be due to retinal artery occlusion

05 Subarachnoid haemorrhage


98 Other, specify 99 Not known Attributes: Pre hospital

On admission Current working Final Diagnosis (Discharge) Probability:

Definite (no realistic alternative) Probable (alternative diagnoses exist but less likely than the probable diagnosis) Possible (an alternative diagnosis is more likely)

Territories:

Carotid Vertebrobasilar Uncertain

Laterality: Left Right Bilateral

Midline

Further information: It is recommended that the high level 3 character values, should be used as the minimum. Many local departments have their own diagnostic lists of the conditions commonly presenting to their department. They should map these against the 3 character codes and values in the table above to create local sub-codes/ sub-values. Ideally the appropriate ICD10 codes should be identified for each diagnosis in these lists such that they may be recorded by the clinical information system as the 3 character high level code plus the 4 character ICD10 code. It is recommended that assistance from local coding departments is sought to ensure accurate use of ICD10. Use of ICD10 will facilitate electronic communications of diagnostic information and will also support departments’ ability to carry out their own audits and to undertake comparisons at regional and national level. Where the appropriate diagnosis is not included in a department’s diagnostic list, it is not sufficient to record ‘other diagnosis’, nor to shoehorn into the ‘nearest fit’, rather this should be recorded as the 3 character code/ value followed by a free text description. The codes and values table above should be adapted to include local diagnostic lists. Recording guidance: Systems should allow for the recording of multiple diagnoses and allow for the recording of free text if necessary. In due course, it is recommended that IT systems incorporate a clinical terminology browser to facilitate recording of appropriate diagnoses.

Most Valid Basis of Diagnosis {Stroke} Definition: A record of the best evidence in support of the diagnosis of stroke.


Format: Characters Field length: 3 Codes and values: Code Value Sub-

code Sub-value Explanatory Notes

00 Unverified Based solely on report from an associated person 01 Death Certificate only The only information available is from a death certificate 02 Clinical only Verified clinically. The diagnosis is based solely on clinical

findings (history and / or physical examination). This is made before death but without the benefit of the following: Verified radiologically. The diagnosis is confirmed by radiology investigations such as CT Scan which is compatible with the patient’s presentation A Brain imaging shows a

stroke lesion compatible with the patient’s clinical presentation

03 Radiological Investigation

B Brain imaging does not demonstrate stroke lesion compatible with the patient’s clinical presentation but excludes non stroke causes of the clinical presentation

Scan may show old infarcts or infarct elsewhere

The diagnosis is confirmed by findings at autopsy. A Autopsy shows a stroke

lesion compatible with the patient’s clinical presentation

04 Autopsy

B Autopsy does not demonstrate the stroke lesion, but does not identify an alternative cause for the clinical presentation.

98 Other, specify Another investigation, for example Biomarkers. 99 Not known Related data items: Diagnosis Neurovascular

Recording guidance: Systems must allow for the recording of multiple options. Users may wish to augment code 98 – “Other – specify” with a free text field for recording other diagnosis support.


Anatomical Site of Lesion {Stroke} Common name(s): Site of Lesion {Stroke} Definition: A record of the site of the acute brain lesion that has caused the main cerebrovascular event. Format: Characters Field length: 3 Codes and values: Code Value Sub-code Sub-value 01 Brain Stem 02 Cerebellum 03 Mid Brain

A Cortical B Subcortical C Lacunar D Lobar

04 Cerebral Hemisphere

E Deep White Matter 05 Intraventricular 06 Uncertain 98 Other 99 Not known Attributes: Laterality:

Left Right Bilateral Midline

Recording guidance: Systems must allow for the recording of multiple options.

Circulatory Area Affected {Stroke} Definition: A record of the area of circulation in the brain that has been affected by the main cerebrovascular event. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 01 Anterior In distribution of internal carotid artery or its branches. 02 Posterior In distribution of vertebrobasilar vessels or its branches. 03 Uncertain 98 Other For example, borderzone


99 Not known Attributes: Laterality:

Left Right Bilateral Midline


Neurological Assessments Data item Definition Conscious Level For Consultation Glasgow Coma Scale – Eye Opening

For Consultation

Glasgow Coma Scale – Verbal Response

For Consultation

Glasgow Coma Scale – Best Motor Response

For Consultation

Cognitive Assessment Status

For Consultation

Cognitive Assessment Results

For Consultation

Eye Movements Status For Consultation Eye Movement Disorder For Consultation Visual Field Status For Consultation Visual Field Defect For Consultation Visuospatial Perception Status

For Consultation

Aphasia Status For Consultation Dysarthria Status For Consultation Muscle Power (Facial) Assessment Result

For Consultation

Muscle Power (Limb) Assessment Result

For Consultation

Finger / Nose Test Results For Consultation Hand Coordination Result For Consultation Handedness For Consultation Heel / Shin Test Results For Consultation Sensory Perception Results (Light Touch)

For Consultation

Sensory Perception Results (Pin Prick)

For Consultation

Sensory Perception Results (Temperature)

For Consultation

Sensory Perception Results (Joint Position Sense)

For Consultation

Sensory Perception Results (Vibration Sense)

For Consultation

Conscious Level Main source of standard: National Institutes of Health (NIH) Common name(s): Level of consciousness Definition: A record of the patient’s level of consciousness. Format: Characters


Field length: 2 Codes and values: Code Value Explanatory Notes 01 Alert Fully alert and keenly responsive 02 Drowsy Can be aroused with minor stimulation 03 Stuporous Requires repeated stimulation to attend 04 Coma Comatose and responds only with reflex motor or automatic

responses 99 Not known

Glasgow Coma Scale - Eye Opening Common name(s): GCS Definition: A record of the patient’s eye response assessed using the Glasgow Coma Scale tool. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 01 Spontaneous Open with blinking at baseline. Score of 4. 02 To speech Score of 3 03 To pain Not applied to face. Score of 2. 04 None Score of 1. 05 Unassessable For example, patient does not have eyes Attributes: Laterality: Left Right Bilateral Related data items: Conscious Level Further information: The Glasgow Coma Scale provides a framework for describing the state of a patient in terms of three aspects of responsiveness: eye opening, verbal response and best motor response, each stratified according to increasing impairment (Ref SIGN 46).

Glasgow Coma Scale - Verbal Response Common name(s): GCS Definition: A record of the patient’s verbal response assessed using the Glasgow Coma Scale tool.


Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 01 Oriented Score of 5. 02 Confused conversation Able to answer questions. Score of 4 03 Inappropriate words Score of 3. 04 Incomprehensible speech or noises Score of 2. 05 None Score of 1. 06 Unassessable For example, patient is intubated Related data items: Conscious Level Further information: The Glasgow Coma Scale provides a framework for describing the state of a patient in terms of three aspects of responsiveness: eye opening, verbal response and best motor response, each stratified according to increasing impairment (Ref SIGN 46).

Glasgow Coma Scale - Best Motor Response Common name(s): GCS Definition: A record of the patient’s motor response assessed using the Glasgow Coma Scale tool. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 01 Obey Commands For movement. Score of 6. 02 Localise Pain Purposeful movement to painful stimuli. Score of 5. 03 Flexion Normal Withdraws in response to pain. Score of 4. 04 Flexion Abnormal Score of 3. 05 Extend Extension response in response to pain. Score of 2. 06 None Score of 1. 07 Unassessable For example, patient is paralysed for ventilation Related data items: Conscious Level Further information: The Glasgow Coma Scale provides a framework for describing the state of a patient in terms of three aspects of responsiveness: eye opening, verbal response and best motor response, each stratified according to increasing impairment (Ref SIGN 46).


Cognitive Assessment Status Definition: A record of whether the patient has had a cognitive assessment and the method by which they were assessed. Format: Characters Field length: 3 Codes and values: Code Value Sub-


00 Not done Patient has had an assessment of cognitive function such as orientation in time, place and person, concentration, memory and recall. A Abbreviated Mental Test Score (AMTS) B Mental Status Questionnaire

(MSQ) Similar to the AMTS but developed in Scotland

C Mini Mental State Examination (MMSE) D Clinical Psychologist Evaluation

01 Done

Z Other 02 Untestable 98 Other 99 Not known Related data items: Conscious Level Cognitive Assessment Results

Cognitive Assessment Results Definition: A high level record of the results of the patient’s cognitive assessment. Format: Characters Field length: 2 Codes and values: Code Value 00 Normal 01 Abnormal 99 Not known Related data items: Conscious Level Cognitive Assessment Status


Eye Movements Status Definition: A record of the eye movement examination findings as to whether the patient suffers from difficulties moving one or both eyes. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal No eye movement difficulty 01 Abnormal Eye movement disorder(s) present 02 Untestable 99 Not known Attributes: Laterality: Left Right

Vertical Related Data Item: Conscious Level Eye Movement Disorder Visual Field Status

Visual Field Defect

Eye Movement Disorder Definition: A description of the patient’s specific eye movement disorder(s) as identified by examination. Format: Characters Field length: 3 Codes and values: Code Value Sub-code Sub-value Explanatory

Notes 00 None No eye movement disorder

Vergence eye defect, that is movements of the two eyes in which the visual axes do not remain parallel but move in opposite relative directions. A Convergence

01 Disjugate (Otherwise known as Dysconjugate)

B Divergence 02 Gaze palsy Inability of both eyes to move together in a

specified direction A Horizontal B Vertical

03 Nystagmus

C Rotational Also known as Tortional Nystagmus


04 Untestable 98 Other 99 Not known Attributes: Laterality: Left Right Bilateral Related Data Item: Conscious Level Eye Movement Status Visual Field Status

Visual Field Defect Recording guidance: Systems must allow for the recording of multiple options.

Visual Field Status Definition: A high level record of the status of the patient’s visual field. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal No defect. NIH equivalent – no visual field loss 01 Abnormal Visual field defect present 02 Untestable 99 Not known Attributes: Laterality: Left Right Bilateral Midline Related Data Item: Conscious Level Eye Movement Status Eye Movement Disorder

Visual Field Defect Further information: Clinical judgement is required to determine if the patient is able to undertake the assessment. If aphasia means they cannot understand what they are being asked to do then ‘Untestable’ should be recorded.


Visual Field Defect Definition: A description of the patient’s specific visual field defect. Format: Characters Field length: 3 Codes and values: Code Value Sub-code Sub-value Explanatory Notes 00 None No visual field defect 01 Homonymous Hemianopia 02 Quadrantanopia

A Superior Loss of upper half of visual field

03 Altitudinal hemianopia

B Inferior Loss of lower half of visual field

04 Bitemporal hemianopia 05 Binasal hemianopia 06 Central Scotoma Loss of vision confined to the centre of the field 07 Concentric Constriction Field of vision contracted all round its periphery 08 Untestable 96 Not applicable For example, complete blindness 98 Other 99 Not known Attributes: Laterality:

Left Right Bilateral (Binocular) Related Data Item: Conscious Level Eye Movement Status Eye Movement Disorder

Visual Field Status

Visuospatial Perception Status Definition: A record of the outcome of an assessment of the patient’s perception or selective inattention of visual, sensory and/ or motor stimuli. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal No visuospatial problems 01 Abnormal 02 Untestable


03 Not done 99 Not known Attributes: Severity: Mild

Moderate Severe

Laterality: Left Right Bilateral Sub-data item: Visuospatial modality: Visual

Sensory Motor

Further Information: The term visuospatial inattention can be used interchangeably with the term visuospatial neglect.

Aphasia Status Common name(s): Dysphasia Definition: A record of the outcome of an assessment of the content and fluency of the patient’s language production and their comprehension of language, both spoken and/or written. Format: Characters Field length: 2 Codes and values: Code Value 00 Normal 01 Impaired 02 Untestable 03 Not done 99 Not known Attributes: Severity: Mild

Moderate Severe

Sub-data item: Aphasia type: Expressive

Receptive Global Fluent Non- fluent


Further information: The term aphasia can be used interchangeably with the term dysphasia.

Dysarthria Status Common name(s): Slurred Speech Definition: A record of the outcome of an assessment of the patient’s ability to articulate words. Format: Characters Field length: 2 Codes and values: Code Value 00 Normal 01 Impaired 02 Untestable 03 Not done 99 Not known Attributes: Severity: Mild

Moderate Severe

Further information: Dysarthria is a motor speech impairment of varying severity affecting clarity of speech, voice quality and volume, and overall intelligibility.

Muscle Power (Facial) Assessment Result Common name(s): Facial Weakness Definition: A record of the outcome of an assessment of the patient’s facial muscular strength. Format: Characters Field length: 2 Codes and values:

Code Value Explanatory Notes 00 Normal No weakness. 01 Abnormal Patient has muscular weakness 02 Untestable For example joint fused, patient unconscious. 03 Not done 99 Not known


Attributes: Laterality: Left

Right Bilateral

Severity: Mild Moderate Severe

Sub-data item: Motor level: Upper motor neurone Lower motor neurone Further Information: The facial muscle power sub-values may be mapped to other assessment scales incorporating facial motor power, for example the National Institutes of Health (NIH) Stroke Scale.

Muscle Power (Limb) Assessment Result Definition: A record of the outcome of an assessment of the patient’s limb muscular strength. Format: Characters Field length: 3 Codes and values:


Right Bilateral

Code Value Sub-code

Sub-value Explanatory Notes

00 Normal No weakness. MRC Grade 5 A Drift only Positive drift of arm/ leg. B MRC Grade 4 Movement against resistance,

but weaker than other side. C MRC Grade 3 Movement against gravity but

not against resistance. D MRC Grade 2 Movement only with gravity

eliminated. E MRC Grade 1 Palpable contraction but no

visible movement.

01 Abnormal

F MRC Grade 0 No movement. 02 Untestable For example joint fused, limb amputated, patient unconscious. 03 Not done 99 Not known


Sub-data items: Anatomical site: Hand

Arm Leg Foot

Motor level: Upper motor neurone Lower motor neurone Further Information: The result(s) of power assessment(s) on individual muscle group(s) may be recorded or the summary result for a related group of assessments, for example upper limb power. The anatomical site should be recorded to specify the particular assessment performed. The MRC grades for muscle power may be mapped to other assessment scales incorporating motor power, for example the National Institutes of Health (NIH) Stroke Scale.

Finger / Nose Test Results Definition: A record of the outcome of the finger / nose test to assess the patient’s upper limb coordination, motor weakness or fine motor control. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal No difficulties, the task is performed well and movement is smooth

and accurate 01 Abnormal Patient is unable to perform the task well and movement is clumsy

and inaccurate 02 Untestable Patient is unable to take the test due to severe weakness 03 Not done 99 Not known Attributes: Laterality: Left

Right Bilateral

Further Information: The finger/ nose test is performed by asking the patient to touch the tip of their nose with their index finger with eyes open, then asking them to alternately touch the examiner’s finger and their own nose as fast as they can. Clinical judgement is required to determine if the patient is able to undertake the assessment. If aphasia means they cannot understand what they are being asked to do then ‘Untestable’ should be recorded.


Hand Coordination Result Definition: A record of the outcome of assessment of the patient’s hand coordination. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal No coordination difficulties 01 Abnormal Patient experiences difficulties with hand coordination 02 Untestable 03 Not done 98 Other 99 Not known Attributes: Laterality: Left

Right Midline Bilateral

Severity: Mild Moderate Severe

Further Information: Hand coordination may be assessed by asking the patient to touch the tip of their thumb to the tips of each of other fingers of that hand in rapid succession. Clinical judgement is required to determine if the patient is able to undertake the assessment. If aphasia means they cannot understand what they are being asked to do then ‘Untestable’ should be recorded.

Handedness Common name(s): Hand preference Definition: A record of the patient’s favoured hand. Format: Characters Field length: 2 Codes and Values: Code Value Explanatory Notes 01 Left


02 Right 03 Bilateral No preference or ambidextrous 04 Not yet established In children, generally under 18 months, where handedness

has not yet been established. 05 Untestable 98 Other For example, where patient was left handed as a child but

trained to write with the right hand 99 Not known Further information: Hand preference or handedness is: "When the arms and hands are asymmetrical in use and function so as to reliably favour one hand or the other across a range of skilful acts" (Harris and Carlson 1988). Clinical judgement is required to determine if the patient is able to undertake the assessment. If aphasia means they cannot understand what they are being asked to do then ‘Untestable’ should be recorded.

Heel / Shin Test Results Definition: A record of the outcome of the heel / shin test to assess the patient’s lower limb coordination. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal No difficulties, the task is performed well and movement smooth

and accurate 01 Abnormal Patient is unable to perform the task well and movement is

clumsy and inaccurate 02 Untestable For example, the patient has severe weakness of the leg 03 Not done 99 Not known Attributes: Laterality: Left

Right Bilateral

Further Information: The heel/ shin test is performed by asking the patient to run their heel repeatedly from the opposite knee down the front of the leg to the big toe. Clinical judgement is required to determine if the patient is able to undertake the assessment. If aphasia means they cannot understand what they are being asked to do then ‘Untestable’ should be recorded.


Sensory Perception Results (Light Touch) Common name(s): Sensation (Light Touch), Light Touch Definition: A record of the outcome of an assessment of the patient’s sensory perception of light touch. Format: Characters Field length: 3 Codes and values: Code Value Sub-


00 Normal No abnormality of sensation. A Mild loss of

sensation Patient reports subjective reduction in sensation only

B Moderate loss of sensation

Patient has objective reduction in sensation with an increased threshold for detecting light touch compared with unaffected part

C Severe loss of sensation

Patient is unaware of being touched with strong stimulus

01 Abnormal

D Other altered sensation

Increased sensitivity or altered sensation to light touch

02 Untestable 03 Not done 99 Not known Attributes: Laterality: Left


Sub-data item: Anatomical site: Face

Hand Arm Leg Foot Trunk

Sensory Perception Results (Pin Prick) Common name(s): Sensation (Pin Prick), Pin Prick Definition: A record of the outcome of an assessment of the patient’s sensory perception of pinprick. Format: Characters


Field length: 3 Codes and values: Code Value Sub-


00 Normal No abnormality of sensation. A Mild loss of



Patient has objective reduction in sensation with an increased threshold for detecting pin prick compared with unaffected part


Patient is unaware of pin prick

01 Abnormal

D Other alteration of sensation

Increased sensitivity or altered sensation to pin prick





Sensory Perception Results (Temperature) Common name(s): Sensation (Temperature) Definition: A record of the outcome of an assessment of the patient’s sensory perception of temperature. Format: Characters Field length: 3 Codes and values: Code Value Sub-


00 Normal No loss of sensation. 01 Abnormal


A Mild loss of sensation

Patient reports subjective reduction in sensation only


Patient has objective reduction in sensation with an increased threshold for detecting temperature compared with unaffected part


Patient is unaware of hot or cold stimulus

D Other alteration in sensation

Increased sensitivity or altered sensation to temperature





Sensory Perception Results (Joint Position Sense) Common name(s): Sensation (Joint Position Sense), Proprioception Definition: A record of the outcome of an assessment of the patient’s sensory perception of joint position sense. Format: Characters Field length: 3 Codes and values: Code Value Sub-


00 Normal No loss of sensation. 01 Abnormal A Mild loss of

sensation Patient unable accurately report slight or slow movements in finger or toe



Patient unable to accurately report large movements or changes in position of fingers, toes or limbs


Patient has no awareness of limb being moved or position of limb



Sub-data item: Anatomical site: Fingers

Hand Arm Leg Foot Toes

Sensory Perception Results (Vibration Sense) Common name(s): Sensation (Vibration Sense), Vibration Definition: A record of the outcome of an assessment of the patient’s sensory perception of vibration sense. Format: Characters Field length: 3 Codes and values: Code Value Sub-


00 Normal No loss of sensation. A Mild loss of



Patient has objective reduction in sensation with an increased threshold for detecting vibration compared with unaffected part

01 Abnormal


Patient has no awareness of vibration

02 Untestable 03 Not done


99 Not known Attributes: Laterality: Left


Sub-data item: Anatomical site: Forehead

Sternum Elbow Wrist Finger Pelvis Knee Ankle Toe


Stroke Scale Scores Data item Definition National Institutes of Health (NIH) Scale Score

For Consultation

Scandinavian Stroke Scale Score

For Consultation

European Stroke Scale Score

For Consultation

Canadian Neurological Scale Score

For Consultation

National Institutes of Health (NIH) Stroke Scale Score Main source of standard: NIH Stroke Scale, National Institute of Neurological Disorders and Stroke, USA (http://www.ninds.nih.gov/doctors/index.htm) Definition: A record of the patient’s acute stroke assessment score, measured using the NIH stroke score. Format: Numeric Field length: 2 Codes and Values: N/A Further information: The NIH Stroke Scale supports consistent measurement of the severity of neurological dysfunction in stroke patients, including the assessment of changes in neurological deficits over time. It is based on scored assessments of: level of consciousness; best gaze; visual; facial palsy; motor arm; motor leg; limb ataxia; sensory; best language; dysarthria; extinction & inattention.

Scandinavian Stroke Scale Score Main source of standard: Multicenter trial of hemodilution in ischaemic stroke -background and study protocol. Scandinavian Stroke Study Group (www.strokecenter.org/trials/scales/scandinavian.html). Definition: A record of the patient’s acute stroke assessment score, measured using the Scandinavian Stroke Scale. Format: Numeric Field length: 2 Codes and Values: N/A Further information: The Scandinavian Stroke Scale is an acute stroke assessment scale based on scored assessments of: level of consciousness; eye movement; arm


motor power; hand motor power; leg motor power; orientation; speech; facial palsy and gait. A Prognostic Score and a Long Term Score can be calculated.

European Stroke Scale Score Main source of standard: European Stroke Scale Score (1994) Definition: A record of the patient’s acute stroke assessment score, measured using the European Stroke Scale Score. Format: Characters Field length: 2 Codes and Values: N/A Further information: The European Stroke Scale consists of 14 items selected for their specificity and their prognostic value. It is designed for patients with middle cerebral artery stroke for detecting therapeutic effect and matching of treatment groups in stroke trials (Ref The European Stroke Scale 1994 Hantson L, De Weerdt W, De Keyser J, Diener HC, Franke C, Palm R, Van Orshoven M, Schoonderwalt H, De Klippel N, Herroelen L, et al).

Canadian Neurological Scale Score Definition: A record of the patient’s acute stroke assessment score, measured using the Canadian Stroke Scale Score (CNS). Format: Numeric Field length: 2 Codes and Values: N/A Further information: The Canadian Neurological Scale (CNS) is an acute stroke assessment scale based on scored assessments of mentation (level of consciousness, orientation and speech) and motor function of arms, legs and face.


Investigations Data Item Definition Record of Investigation

A record of whether or not an investigation has been planned or carried out

Reason for no Investigation

Explanation for why an investigation was not performed where it might be expected to be performed, e.g. when clinical guidelines recommend it should be performed.

Note: This item has been approved and is available in the Health & Social Care Data Dictionary

Haematology Table Data Item Definition Haemoglobin The recorded haemoglobin in blood by laboratory

assay (g/L) White Cell Count Results *Generic – For Development Platelet Count Results *Generic – For Development Erythrocyte Sedimentation Rate Test Results


International Normalised Ratio Results


Activated Partial Thromboplastin Time Results


Plasma Viscosity Results *Generic – For Development Note: The above data item has already been approved and is available in the Health & Social Care

Data Dictionary. *This item is undergoing development as part of the Generic Data Standards

Biochemistry Table Data Item Definition Blood Glucose Level A record of the patient’s blood glucose level (mmol/L) Serum Total Cholesterol A record of a fasting or non-fasting serum total

cholesterol level C Reactive Protein Level *Generic – For Development Serum High Density Lipoprotein Cholesterol Level

The recorded serum High Density Lipoprotein (HDL) cholesterol level (mmol/L)

Serum Low Density Lipoprotein Cholesterol Level

The recorded serum Low Density Lipoprotein (LDL) cholesterol level (mmol/L)

Triglyceride Level A record of the patient’s triglyceride level (mmol/L). Serum Urea Level A record of the patient’s Serum Urea level (mmol

Urea/L). Potassium Level A record of the patient’s potassium level (mmol/L) Sodium Level A record of the patient’s sodium level (mmol/L) Serum Creatinine Kinase *Generic – For Development


Serum Creatinine The recorded serum creatinine using a laboratory assay (umol/L)

Albumin Level A record of the patient’s Albumin level (g/L) Bilirubin Level A record of the patient’s Bilirubin level (µmol/L) Alkaline Phosphatase Level

A record of the patient’s Alkaline Phosphatase Level (U/L)

Alanine Aminotransferase Level

A record of the patient’s Alanine Aminotransferase (ALT) Level (U/L)

Gamma Glutamyltransferase Level (GGT)

A record of the patient’s Gamma Glutamyltransferase Level (GGT) level (U/L)

Peak Serum Troponin The highest serum troponin level in a series of measurements

Troponin Assay Specification of the type of troponin assay used Thyroid Function Test Type *Generic – For Development Thyroid Function Results *Generic – For Development Thyroid Stimulating Hormone

A record of the patient’s Thyroid Stimulating Hormone (TSH) level (mµ/L).

Free Thyroxine Level A record of the patient’s Free Thyroxine (Free T4) level (pmol/L).

*This item is undergoing development as part of the Generic Data Standards. Note: The above data items have already been approved and are available in the Health & Social

Care Data Dictionary.

Other Investigations Table Data Item Definition Thrombophilia Screen *Generic – For Development *This item is undergoing development as part of the Generic Data Standards.


Radiological Investigations Data item Definition Computerised Tomography Scan (Brain) Results

For Consultation

Computerised Tomography Scan (Brain) Abnormal Results {Stroke}

For Consultation

Computerised Tomography Scan (Brain) Type {Stroke}

For Consultation

Magnetic Resonance Imaging Scan (Brain) Results

For Consultation

Magnetic Resonance Imaging Scan (Brain) Abnormal Results {Stroke}

For Consultation

Magnetic Resonance Imaging Scan (Brain) Type {Stroke}

For Consultation

Brain Imaging Consistent with Current Cerebrovascular Event

For Consultation

Computerised Tomography Scan (Brain) Results Common name(s): CT Brain Scan Results Definition: A high level record of the findings of a specific Computerised Tomography Brain Scan investigation. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal 01 Abnormal 02 Indeterminate Unable to categorise definitively 03 Technically Difficult For example movement, artefact 98 Other 99 Not known Related data items: Record of Investigation


Recording guidance: The date on which the investigation is performed should be recorded to allow this timescale to be measured for clinical governance purposes.


Computerised Tomography Scan (Brain) Abnormal Results {Stroke} Common name(s): CT Brain Scan Abnormal Results {Stroke} Definition: A description of the abnormal findings of a specific Computerised Tomography Brain Scan Investigation. Format: Characters Field length: 3 Codes and values: Code Value Sub-


A Infarct B Haemorrhage C Haemorrhagic Infarct

01 Acute Lesion Stroke

D Subarachnoid Haemorrhage A Probable Infarct

02 Old Stroke Lesion

B Probable Haemorrhage A Atrophy B Other Infarct Present C White Matter Disease Can also be known

as diffuse small vessel disease, leukoaraiosis and peri ventricular low density.

D Arachnoid Cyst E Tumour F Infection

03 Other Abnormality

Z Other 99 Not known Attributes: Laterality Left Right Midline Bilateral Related data items: Record of Investigation

Computerised Tomography Scan (Brain) Results Computerised Tomography Scan (Brain) Type {Stroke} Brain Imaging Consistent with Current Cerebrovascular Event

Further information: Clinical guidelines recommend that all patients with symptoms suggestive of acute Stroke should undergo CT brain scanning as soon as possible –


preferably within 48 hours – and no later than seven days (SIGN Guideline 13 – currently under review). Recording guidance: The date on which the investigation is performed should be recorded to allow this timescale to be measured for clinical governance purposes. Systems must allow for the recording of multiple options.

Computerised Tomography Scan (Brain) Type {Stroke} Common name(s): CT Scan Type Definition: A record of the CT Scan type. Format: Characters Field length: 3 Codes and values: Code Value Sub code Sub value 01 Non contrast scan

02 Contrast enhanced scan A Perfusion scanning

98 Other 99 Not known Related data items: Computerised Tomography Scan (Brain) Results



Magnetic Resonance Imaging Scan (Brain) Results Common name(s): MRI Scan Results, MRI Results Definition: A high level record of the results of MRI Brain Scan investigation. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal 01 Abnormal 02 Indeterminate Unable to categorise definitively 03 Technically Difficult For example movement, artefact 98 Other 99 Not known


Related data items: Record of Investigation Magnetic Resonance Imaging Scan (Brain) Abnormal Results {Stroke} Magnetic Resonance Imaging Scan (Brain) Type {Stroke}

Recording guidance: The date on which the investigation is performed should be recorded to allow this timescale to be measured for clinical governance purposes.

Magnetic Resonance Imaging Scan (Brain) Abnormal Results {Stroke} Common name(s): MRI Scan Results, MRI Results Definition: A description of the abnormal findings of the results of MRI Brain Scan investigation. Format: Characters Field length: 3 Codes and values: Code Value Sub-code Sub-value Explanatory Notes

A Infarct B Haemorrhage C Haemorrhagic Infarct

01 Acute Stroke Lesion

D Subarachnoid haemorrhage

A Infarct

02 Old Stroke Lesion

B Haemorrhage 03 Micro-

haemorrhages

A Atrophy B Other discrete infarct(s)

present

C White Matter Disease Can also be known as diffuse small vessel disease and leukoaraiosis. This can identify presence of CADASIL.

D Arachnoid cyst E Tumour F Infection

04 Other abnormality

Z Other 98 Other This includes tumour and infection 99 Not known



Right Midline

Bilateral Related data items: Record of Investigation

Magnetic Resonance Imaging Scan (Brain) Results Magnetic Resonance Imaging Scan (Brain) Type {Stroke} Brain Imaging Consistent with Current Cerebrovascular Event

Further information: MRI investigation may enable early identification of ischaemic lesions although within the first few hours, the distinction between haemorrhage and infarction may be difficult. MRI allows distinction between haemorrhagic and ischaemic lesions several weeks after the acute stroke (Ref SIGN 13 – guideline currently under review). Recording guidance: The date on which the investigation is performed should be recorded to allow this timescale to be measured for clinical governance purposes. Systems must allow for the recording of multiple options.

Magnetic Resonance Imaging Scan (Brain) Type {Stroke} Common name(s): MRI Sequence Definition: A record of the sequence type used for the MRI Scan. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 01 Diffusion Weighted (DWI) and

Apparent Diffusion Coefficient (ADC) Sequence

Diffusion Weighted and Apparent Diffusion Coefficient Sequence are routinely obtained at the same time.

02 Gradient Echo Sequence 03 FLAIR Sequence 04 T1 Sequence 05 T2 Sequence 06 Perfusion 98 Other 99 Not known Related data items: Magnetic Resonance Imaging Scan (Brain) Results

Magnetic Resonance Imaging Scan (Brain) Abnormal Results {Stroke}



Brain Imaging Consistent with Current Cerebrovascular Event Definition: A record of whether the results of the radiological investigations are consistent with the patient’s current event. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 No Radiological findings are not consistent with current symptoms. 01 Yes Radiological findings are consistent with current symptoms. 02 Uncertain It is unclear whether the findings are consistent with current

symptoms. 99 Not known Related data items: Computerised Tomography Scan (Brain) Results

Computerised Tomography Scan (Brain) Abnormal Results {Stroke} Magnetic Resonance Imaging Scan (Brain) Results Magnetic Resonance Imaging Scan (Brain) Abnormal Results {Stroke}

Angiography Data item Definition Imaging of Blood Vessels of Brain (Techniques)

For Consultation

Imaging of Blood Vessels of Brain (Results)

For Consultation

Nature of Blood Vessel Abnormality

For Consultation

Imaging of Blood Vessels of Brain (Techniques) Common name(s): Angiography of Brain (Techniques) Definition: A record of the method used for imaging of the patient’s blood vessels of the neck and/or brain. Format: Characters Field length: 3 Codes and values:


Code Value Sub code Sub value 01 Duplex of Extracranial Vessels

02 Transcranial Doppler Ultrasound

A Highly Selective B Carotid C Arch

03 Conventional Intra Arterial Angiography

D Cerebral Venography A Intracranial B Extracranial

04 Magnetic Resonance Angiography

C Cerebral Venography 05 Computerised Tomography Angiography 98 Other 99 Not known Attributes: Contrast Imaging Technique: No Contrast

Contrast Enhanced Laterality: Left

Right Midline

Bilateral Related data items: Record of Investigation

Imaging of Blood Vessels of Brain (Results)

Imaging of Blood Vessels of Brain (Results) Common name(s): Angiography of Brain (Results) Definition: A description of the findings from the imaging of the patient’s blood vessels of the neck and/or brain. Format: Characters Field length: 3 Codes and values: Code Value Sub-code Sub-value 00 Normal

Abnormalities detected, but nature of abnormality not specified A Internal Carotid Artery B Middle Cerebral Artery C Anterior Cerebral Artery D Posterior Cerebral Artery

01 Abnormal Intracranial

E Posterior Communicating Artery


F Anterior Communicating Artery G Basilar Artery H Vertebral Artery Z Other Abnormalities detected, but nature of abnormality not specified A Common Carotid Artery B Internal Carotid Artery C External Carotid Artery D Vertebral Artery E Subclavian Artery F Aortic Arch G Innominate Artery

02 Abnormal Extracranial

Z Other A Cortical Veins B Sagital Sinus C Tranverse Sinus

03 Abnormal venous drainage

Z Other 04 Indeterminate Technically unsatisfactory 98 Other, specify 99 Not known Attributes: Laterality: Left

Right Midline

Bilateral Related Data Items: Imaging of Blood vessels of Brain (Techniques)

Nature of Blood Vessel Abnormality Recording guidance: The result of an investigation should be related to the date on which the investigation was performed. System must allow for the recording of multiple options. Users may wish to augment code 98 – “Other – specify” with a free text field for recording other result.

Nature of Blood Vessel Abnormality Definition: A record of the patient’s blood vessel abnormalities. Format: Characters Field length: 2 Codes and values: Code Value 01 Aneurysm 02 Dissection 03 Emboli 04 Occlusion


05 Reversed flow 06 Stenosis 07 Thrombosed 08 Tortuous Vessel 98 Other, specify

Vessel Stenosis Data item Definition Imaging of Blood Vessels – Arterial Stenosis

For Consultation

Imaging of Blood Vessels – Stenosis Percentage Range (%)

For Consultation

Imaging of Blood Vessels – Method of Calculating Degree of Stenosis of Internal Carotid Artery

For Consultation

Imaging of Blood Vessels - Arterial Stenosis Definition: A record of the severity of the narrowing of the patient’s arteries. Format: Characters Field length: 3 Codes and values: Code Value Sub-


01 Normal No stenosis A Mild Stenosis B Moderate Stenosis C Severe Stenosis D Trickle Flow Can also be known as Pre Occlusion

or Collapsed Distal Internal Carotid

02 Abnormal

E Occlusion 99 Not known Related data items: Imaging of Blood Vessels - Stenosis Percentage Range (%)

Imaging of Blood Vessels - Method of Calculating Degree of Stenosis of Internal Carotid Artery


Imaging of Blood Vessels - Stenosis Percentage Range (%) Common name(s): Atherosclerosis percentage range (%) Definition: A record of the stenosis percentage range. Format: Numeric (+/- nn – nnn) Field length: 6 Codes and values: N/A Related data items: Imaging of Blood Vessels - Arterial Stenosis

Imaging of Blood Vessels - Method of Calculating Degree of Stenosis of Internal Carotid Artery

Recording guidance: The system should allow the recording of a negative value.

Imaging of Blood Vessels - Method of Calculating Degree of Stenosis of Internal Carotid Artery Definition: A record of the method used to determine the degree of stenosis. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 01 North American (NASCET) Denominator The diameter of the Distal

Internal Carotid is used as the denominator. This method may result in a negative value.

02 European (ECST) Denominator The diameter of the Carotid Bulb is used as the denominator

03 Common Carotid Denominator The diameter of the Common Carotid is used as the denominator

98 Other 99 Not known Related data items: Imaging of Blood Vessels - Arterial Stenosis

Imaging of Blood Vessels - Stenosis Percentage Range (%)


Cardiac Investigations Data item Definitions Electrocardiography Results

For Consultation

Electrocardiography Abnormal Results {Stroke}

For Consultation

Electrocardiography (Ambulatory) Monitoring Results {Stroke}

For Consultation

Electrocardiography (Ambulatory) Monitoring Period

For Consultation

Electrocardiography (Ambulatory) Monitoring Type

For Consultation

Echocardiogram Investigation Type

To be developed within the forthcoming Heart Failure dataset

Echocardiogram Results For Consultation Echocardiogram Abnormal Results {Stroke}

For Consultation

Electrocardiography Results Common name(s): ECG Results Definition: A high level report on the ECG investigation, outlining whether it was judged to be normal or abnormal. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal No ECG abnormalities detected 01 Abnormal ECG abnormalities detected. 02 Inconclusive 03 Technically Difficult 99 Not known Result of ECG is not known Attributes: Pre-existence: New (changed from previous ECG)

Old (unchanged from previous ECG) Related data items: Record of Investigation Electrocardiography Abnormal Results {Stroke} Recording guidance: The result of an investigation should be related to the date on which the investigation was performed. Systems must allow for the recording of multiple options.


Electrocardiography Abnormal Results {Stroke} Common name(s): ECG Results Definition: A description of the abnormal findings of a specific electrocardiography investigation. Format: Characters Field length: 3 Codes and values: Code Value Explanatory Notes 01 Ischaemic Changes ECG suggestive of ischaemic heart disease 02 Left Bundle Branch Block LBBB 03 Recent MI 04 Atrial Fibrillation 05 Atrial Flutter 06 Ventricular Arrhythmia 07 Left Ventricular Hypertrophy 98 Other Other ECG changes Attributes: Pre-existence: New (changed from previous ECG)

Old (unchanged from previous ECG) Related data items: Record of Investigation Electrocardiography Results Further information: ECG examinations in patients with acute stroke may provide evidence of cardiac disease and therefore possible embolic source (Ref SIGN 13 – guideline currently under review). Recording guidance: The result of an investigation should be related to the date on which the investigation was performed. Systems must allow for the recording of multiple options.

Electrocardiography (Ambulatory) Monitoring Results {Stroke} Common name(s): Ambulatory ECG Results Definition: A record of the results of a specific ambulatory ECG investigation, outlining whether it was judged to be normal or abnormal. Where the ECG is judged to be abnormal, further information on the nature of the abnormality may be specified. Format: Characters Field length: 3


Codes and values: Code Value Sub-

code Sub-value

Explanatory Notes

00 Normal No ECG abnormalities detected ECG abnormalities detected. A Atrial Fibrillation B Atrial Flutter C Ventricular Arrhythmia

01 Abnormal

Z Other Other ECG changes for example significant brady-arrhythmia

02 Inconclusive 03 Technically Difficult 99 Not known Result of ECG is not known Attributes: Pre-existence: New (changed from previous ECG)

Old (unchanged from previous ECG)

Sustained Paroxysmal

Related data items: Record of Investigation

Electrocardiography (Ambulatory) Monitoring Period Electrocardiography (Ambulatory) Monitoring Type

Further information: ECG examinations in patients with acute stroke may provide evidence of cardiac disease and therefore possible embolic source (SIGN 13 – guideline currently under review). Recording guidance: The result of an investigation should be related to the date on which the investigation was performed. Systems must allow for the recording of multiple options.

Electrocardiography (Ambulatory) Monitoring Period Common name(s): ECG Monitoring Period Definition: A record of the duration of the ECG monitoring, measured in days and hours. Format: Characters (DD:hh) Field length: 4 Codes and values: N/A Related data items: Electrocardiography (Ambulatory) Monitoring Results {Stroke}

Electrocardiography (Ambulatory) Monitoring Type


Electrocardiography (Ambulatory) Monitoring Type Common name(s): ECG Monitoring Type Definition: A record of the type of ECG monitoring performed. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 01 Continuous ECG recorded throughout duration of monitoring. 02 Patient Triggered Patient triggers ECG recording when symptomatic. 03 Event Triggered ECG recording triggered when event detected. 98 Other 99 Not known Related data items: Electrocardiography (Ambulatory)Monitoring Results {Stroke}

Electrocardiography (Ambulatory)Monitoring Period

Echocardiogram Results Common name(s): Echo Results Definition: A high level record of the findings of a specific echocardiography investigation. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Normal No echo abnormalities detected 01 Abnormal Abnormalities detected on echo. 02 Inconclusive 03 Technically Difficult The technician was unable to perform an adequate scan

e.g. the patient had severe lung disease 99 Not known Related data items: Record of Investigation

Echocardiogram Abnormal Results {Stroke} Recording guidance: The result of an investigation should be related to the date on which the investigation was performed. System must allow for the recording of multiple options.


Echocardiogram Abnormal Results {Stroke} Common name(s): Echo Results Definition: A description of the abnormal findings of a specific echocardiography investigation. Format: Characters Field length: 3 Codes and values: Code Value Sub-


A Enlarged B Thrombus C Septal Aneurysm D Atrial Septal Defect

(ASD)

E Patent Foramen Ovale (PFO)

01 Left atrium

Z Other A Impairment Echo suggestive of left

ventricular impairment B Hypertrophy Echo suggestive of left

ventricular hypertrophy C Focal Wall Motion

Abnormality

D Dilatation E Thrombus F Aneurysm G Ventricular Septal

Defect (VSD)

02 Left Ventricle

Z Other Significant explains the patient’s condition and requires specific intervention or follow up A Significant Aortic Valve

Stenosis Echo suggestive of significant aortic valve stenosis

B Significant Aortic Valve Regurgitation

Echo suggestive of significant aortic valve regurgitation/ incompetence

C Significant Mitral Valve Stenosis

Echo suggestive of significant mitral valve stenosis

D Significant Mitral Valve Regurgitation

Echo suggestive of significant mitral valve regurgitation/ incompetence

03 Significant Valve Disease

E Vegetations (endocarditic)

With coding of valve affected – aortic, mitral, tricuspid or pulmonary


A Echo Suggestive of

Non-Significant Valve Disease

For example, aortic valve thickening

04 Other Valve Disease

B Echo Suggestive of Other Significant Valve Disease

For example tricuspid regurgitation

A Dilatation B Dissection C Thrombus

05 Aortic Arch Abnormality

D Ulcerated plaque 06 Right to Left

Shunt

A Left atrium B Right atrium C Left ventricle

07 Cardiac Tumour

D Right ventricle 98 Other Abnormality 99 Not known Attributes:

Likely source of embolism Unlikely to be source of embolism Related data items: Record of Investigation Echocardiogram Results

Recording guidance: The result of an investigation should be related to the date on which the investigation was performed. Systems must allow for the recording of multiple options.


Outcomes Data Items Definition Underlying Cause of Death G

The underlying cause of death as recorded by GRO(S) in Part I of the death certificate.

Person Death Date G

The date on which a person died or is officially deemed to have died, as recorded on the Death Certificate.


Audit and Research Data item Definition Patient Postcode at Diagnosis


Clinical Trial Status For Consultation Clinical Trial Participant {Stroke}

For Consultation

Clinical Trial Name {Stroke} For Consultation Date Completed Trial Intervention

For Consultation

*This item is undergoing development as part of the Generic Data Standards.

Clinical Trial Status Definition: A record of whether the patient is currently participating in one or more clinical trials and whether these are interventional or observational in nature. Format: Characters Field length: 3 Codes and values: Code Value Sub code Sub value 00 Not currently participating in trial

A Interventional

01 Currently participating in a trial(s)

B Observational 99 Not known Sub data items: Start date End Date Related data items: Clinical Trial Participant {Stroke}

Date Completed Trial Intervention Clinical Trial Name {Stroke} Associated Professional Details


Clinical Trial Participant {Stroke} Definition: A record of whether or not the patient is a participant in a specific clinical trial. Format: Characters Field length: 3 Codes and values: Code Value Sub-code Sub value Explanatory Notes

A None available No trial availableB Ineligible Patient ineligible for clinical trial therefore

not approached C Consented but

ineligiblePatient consented and then found to be ineligible

D Clinical reasons Patient eligible but not offered trial for clinical/other reasons

00 No

E Declined Patient offered trial and declined

A Already in trial Already in trial at time of onset of current illness/ current contact with healthcare

01 Yes

B Entered

Consented and entered into trial during this contact

98 Other, specify 99 Not known Related data items: Date Completed Trial Intervention

Clinical Trial Status Clinical Trial Name {Stroke}

Associated Professional Details Further information: Clinical trials are ‘a research activity that involves the administration of a test regimen to humans to evaluate its efficacy and safety.’ (Source: Last JM. A Dictionary of Epidemiology, 2nd edition.) Clinical trials may be local, national or international. Trials can be drug company sponsored and monitored. Recording guidance: A patient can be participating in a number of trials simultaneously, at any stage of treatment and it is important to record this information. Users may wish to augment code 98 – “Other – specify” with a free text field.


Clinical Trial Name {Stroke} Definition: The name of the specific clinical trial into which the patient was formally entered. Format: Characters Field length: 3 Codes and values: Code Value Explanatory Notes 00 None

Intervention (e.g. drug or procedure) A Specific Intervention Trial Name

01 Intervention Trial

Z Specific Intervention Trial Name Observational (e.g. interview, investigation, follow up) A Specific Observational Trial Name

02 Observational Trial

Z Specific Observational Trial Name 96 Not applicable Patient not been entered into any clinical trials 98 Other, specify 99 Not known Includes not recorded. Related data items: Clinical Trial Participant {Stroke}

Clinical Trial Status Date Completed Trial Intervention Associated Professional Details

Further information: These trials may be local, national or international. They may be drug company sponsored and monitored. It is noted that stakeholders are investigating the future use of unique trial numbers and it is envisaged that a link with a National Trial system would be used to access up-to-date trial information. Clinical trials are ‘a research activity that involves the administration of a test regimen to humans to evaluate its efficacy and safety.’ (Source: Last JM. A Dictionary of Epidemiology, 2nd edition.) Recording guidance: Users may wish to augment code 98 – “Other – specify” with a free text field for recording other clinical trial names.

Date Completed Trial Intervention Definition: The date that the patient formally completes the trial intervention. Format: Characters (CCYY-MM-DD) Field length: 10 Codes and values: N/A


Sub data items: Verification level Code Value Level 0 Actual Level 1 Estimated Level 2 Not known

Related data items: Clinical Trial Participant {Stroke}

Clinical Trial Status Clinical Trial Name {Stroke} Associated Professional Details

Further information: This is not the date of any follow up to assess the outcomes associated with the intervention. For randomised controlled trials (RCTs) the date the patient was randomised into the trial should be recorded. In non-randomised trials the date of first treatment within the trial setting should be used.


Appendix 1 - Working Group Membership of Stroke Core Working Group Name Position Organisation Dr Ron MacWalter Stroke Consultant (Chair) Tayside Professor Martin Dennis

Stroke Consultant Lothian

Mike McDowall Stroke Registries Coordinator SSCAS Dr Mary-Joan MacLeod

Stroke Consultant Grampian

Hazel Fraser Stroke Coordinator for Fife / Stroke Nurse

Fife

Dr Christine McAlpine

Stroke Consultant Glasgow

Katie Thomson Stroke MCN Glasgow Marion Barlow Associate Specialist, Cardiology Glasgow Margaret R Mitchell Stroke Liaison Team Leader Tayside Elaine Horne Stroke Coordinator Grampian Dr Anne Hendry Stroke Consultant Lanarkshire Moira Forsyth MCN Manager Lanarkshire Gillian Airns Stroke Coordinator Lanarkshire Dr Caroline Morrison Consultant in Public Health Medicine Glasgow Dr Ian Gordon GP Glasgow Dr Alex Doney Stroke Consultant Tayside Dr Steven J C Hamilton

Lead Clinician Grampian Stroke MCN

Grampian

Margaret Somerville Advice and Support Regional Manager CHSS – Inverness

Chest Heart and Stroke Scotland

Claire Stewart Occupational Therapist / AHP Representative

Glasgow

Adam Redpath Programme Principal – CHD and Stroke Programme

ISD

Dr Sue Payne Clinical Lead – CHD and Stroke Programme

ISD

Felicity Naughton Dataset Development Officer ISD Andrea Patton Dataset Development Officer ISD


Appendix 2 - Consultation Distribution List Chief Executives Medical Directors Directors of Public Health Chief Medical Officer Chief Nursing Officer National Advisory Committees • National Advisory Committee for Stroke British Association of Stroke Physicians (BASP – UK) Managed Clinical Networks (MCNs) • Acquired Brain Injury • British Geriatric Society – Scottish Branch • Chest Heart and Stroke Scotland • CHD & Stroke Programme, Information Services Division • Connect • Different Strokes • Extended Audit system (Aberdeen) • Headway • Nursing Home Association • Sentinel Stroke Audit (RCP London) • Scottish Stroke Research Network (Scottish Executive) • Scottish Stroke Care Audit • Scottish Society of Neurosciences • Speakability • Stroke Association UK • Stroke Nurses Forum NCDDP Stakeholders • Clinical eHealth Leads • Community Nursing Network (CNN) • Electronic Clinical Communications Implementation (ECCI) • Health & Social Care Information Centre, Datasets Development Programme

(England) • Improving Mental Health Information Programme • Information Services Division, NSS • Information Standards Group • NHS Health Scotland • NHS Quality Improvement Scotland (QIS) • NHS24 • Open Scotland Information Age Framework (OSIAF)



• Royal College of General Practitioners (Scotland) • Royal College of Nursing (Scotland) • Royal College of Physicians • Royal College of Physicians and Surgeons Glasgow • Royal College of Physicians, London • Royal College of Surgeons • Royal College of Psychiatrists • Scottish Clinical Information Management Practice (SCIMP) • Scottish eHealth Nursing Forum • Scottish Executive Delivery Unit • Scottish Executive Data Standards Branch • Scottish Executive Health Department • UK Data Standards Forum • Voluntary Health Scotland NCDDP Reference & Working Groups • NCDDP Board • NCDDP Support Team • CHD Core Data Standards • Heart Failure Dataset • Electrophysiology Dataset • Stroke Core Data Standards • Stroke Inpatients Dataset • Allied Health Professionals • Nursing and Midwifery


Stroke Core Data Standards - ndc.scot.nhs.uk Core Data Standards.pdf · Stroke Core Data Standards 6 Once approved the Stroke Core Data Standards will be freely and widely available

Documents