Epilepsy Data Standards

Transcription

1 For reference only Do Not Use For more information contact: Epilepsy Data Standards September 2006 National Clinical Dataset Development Programme (NCDDP) Support Team Information Services Area 54E Gyle Square 1 South Gyle Crescent Edinburgh EH12 9EB Tel: to: NCDDPsupportteam@isd.csa.scot.nhs.uk Website:

2 Overview & Background...4 Overview & Background...4 Overview... 4 Epilepsy Data Standards... 4 Background to NCDDP... 5 Generic Data Standards... 5 Clinical Terminology... 6 Date Recording... 6 Patient Administration and Demographics...8 Ethnic, Cultural and Diversity...8 Care Episode Administration...8 General Practice Details...8 Associated Person Details...9 Associated Professional Details...10 Socio-Environmental Details...11 Referral Details...11 Date First Seen by Associated Professional Educational Establishment Details...13 Basic Health Measurements...14 Lifestyle Risk Factors...15 Family History...16 Family History of Specific Condition {Epilepsy} Personal History...17 Personal History of Specific Conditions {Epilepsy} Personal History (Conditions) {Epilepsy} Personal History of Specific Intervention {Epilepsy} Personal Seizure History...20 Seizure Occurrences (Number) Syndrome Type (Epilepsy) Seizure Type (Epilepsy) Seizure Frequency (Epilepsy) Status Epilepticus Episodes Status Epilepticus Type Epilepsy Data Standards 2

3 Medication...26 Medication Concordance Table...27 Management Details...28 Emergency Management {Epilepsy} Community Learning Disability Team Supervision Educational Advice Topic {Epilepsy} Education Advice (Non-specialist) Method(s) Care Plan Created Pregnancy Status Drug Protocol Investigations...32 Investigation Type {Epilepsy} Electro Encephalogram Investigation Type Procedures...34 Surgery Assessment Status Surgery Decision Procedure Performed (Current) {Epilepsy} Outcomes...36 Appendix 1 - Working Group...37 NCDDP Support Team (ISD) Appendix 2 International League Against Epilepsy...38 Appendix 3 - Consultation Distribution List...39 Epilepsy Data Standards 3

4 Overview & Background Overview The Scotland Epilepsy Managed Clinical Networks for Epilepsy commissioned the development of Epilepsy Data Standards for NHS Scotland to ensure common information standards across all clinical settings in which people are undergoing treatment for Epilepsy. An Epilepsy Data Standards Clinical Working Group was established to progress this work, supported by the National Clinical Dataset Development Programme (NCDDP) Support Team based in Information Services Division (ISD). The Epilepsy 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 Epilepsy 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 NCDDPsupportteam@isd.csa.scot.nhs.uk. Comments on all or any part of the document are welcome. Some background information on the NCDDP and the Epilepsy Data Standards development can be found below. If you have any further queries, please go to our website or contact NCDDPsupportteam@isd.csa.scot.nhs.uk. Epilepsy Data Standards The membership of the Epilepsy 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 epilepsy? 2. Will it prevent unnecessary duplication of recording? Once consultation is complete the Epilepsy Data Standards will be submitted to the NCDDP Programme Board for formal approval as a national standard. Epilepsy Data Standards 4

5 Once approved the Epilepsy 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 Epilepsy 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. 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 Epilepsy 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 Felicity.naughton@isd.csa.scot.nhs.uk. Epilepsy Data Standards 5

6 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 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 Epilepsy 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 Government 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: T19:20+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 used. 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. Government Data Standards Catalogue 1. All times must be expressed in the 24 hour clock format, e.g. one minute past midnight is 00: 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. Epilepsy Data Standards 6

7 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. Epilepsy Data Standards 7

8 Patient Administration 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 Postcode G The code allocated by the Post Office to identify a group of postal delivery points. 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 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 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. Ethnic, Cultural and Diversity Data Item Person Current Gender G Person Sex at Birth G Ethnic Group (Self Assigned) G Definition A statement by the individual about the gender they currently identify themselves to be (i.e. self-assigned). This is a factual statement, as far as is known, about the phenotypic (biological) sex of the person at birth A statement made by the service user about their current ethnic group Care Episode Administration 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. Date of Contact G The date on which a contact took place between a patient/client and an individual care professional for the purpose of care. A contact can take place when the Health Care Professional (HCP) is on care premises or visiting the patient and may be in person, by telephone, , letter, text message or telemedicine. 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 Practice Details Data Item Registered GP Practice Code Definition Each GP practice in Scotland is identified by a unique GP Epilepsy Data Standards 8

9 G Address (BS7666) G Postcode G GP General Medical Council Number G Structured Name G - GP Title - GP Family Name - GP Given name Specified General Medical Practitioner Role G practice code. A collection of data describing the addressing of locations. The code allocated by the Post Office to identify a group of postal delivery points. The GMC (General Medical Council) number is the personal identification number issued to each doctor in the UK by the General Medical Council. An ordered sequence of person name elements such as title, forename(s) and family name. 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. Internet Address G The string of characters that identifies an addressee's post box on the Internet. UK Telephone Number G A minimum standard is provided for holding a UK STD code. An extended set of component parts is provided for systems to hold more information. General Practice Registration The registration status of the patient with the general practice Status of Patient G from which they are receiving care. 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 Person Details Data Item Associated Person G Structured Name G - Title - Surname/ Family Name - First Forename Address (BS7666) G Postcode G UK Telephone Number G Internet Address G Current Gender G Person Birth Date G Associated Person Role G Relationship to Client/ Patient Definition 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. An ordered sequence of person name elements such as title, forename(s) and family name. A collection of data describing the addressing of locations. The code allocated by the Post Office to identify a group of postal delivery points. A minimum standard is provided for holding a UK STD code. An extended set of component parts is provided for systems to hold more information. The string of characters that identifies an addressee's post box on the Internet. A statement by the individual about the gender they currently identify themselves to be (i.e. self-assigned). The date on which a person was born or is officially deemed to have been born, as recorded on the Birth Certificate. A description of the particular involvement(s) with/ function(s) fulfilled by an associated person towards the client/ patient. The relationship of an Associated Person to the client/patient. Epilepsy Data Standards 9

10 G 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 Associated Professional G Structured Name G - Title - Surname/ Family Name - First Forename Address (BS7666) G Definition Associated Professionals are those individuals who are involved with the client/ patient in a professional capacity e.g. consultant, social worker, occupational therapist, etc. An ordered sequence of person name elements such as title, forename(s) and family name. A collection of data describing the addressing of locations. Postcode G The code allocated by the Post Office to identify a group of postal delivery points. UK Telephone Number G A minimum standard is provided for holding a UK STD code. An extended set of component parts is provided for systems to hold more information. Internet Address G The string of characters that identifies an addressee's post box on the Internet. Associated Professional Identifier G The unique identifier issued to all health and social care professionals by their professional regulatory body. Associated Professional The recognised professional group to which the care Group G professional belongs and in which they are employed. Associated Professional Role G 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 Associated Professional Employing Organisation Type G name given to the organisation. The type of organisation, body or agency, which currently employs the associated professional in relation to the role they are fulfilling. 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. Epilepsy Data Standards 10

11 Socio-Environmental Details Data Item Definition Accommodation Type G The type of accommodation in which the service user is normally resident Accessibility to Accommodation *Generic For Development Lives With G An indicator to identify the person/ client s domestic circumstances Occupation G The current and/or previous relevant occupation(s) of the patient/client, as described by them. Sector of Care 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. 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. Note: This item has been approved and is available in the Health & Social Care Data Dictionary Referral Details Data Item Date of Referral G Referral Type G Referral Source Definition The date on which a referral communication, to a care professional, team, service or organisation is completed by the referrer source/referrer. Specification of whether a referral relates to a new problem for the Referral Receiver or one already known to that service, team or care professional together with a brief description of the level of service requested by the referrer The type of organisation, service, care professional or other individual making a referral. For consultation Date First Seen by Associated Professional 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. Date First Seen by Associated Professional Common name: Date first seen by Consultant Definition: The date on which an Associated Professional first sees a patient for assessment, investigation or management following a referral. Format: CCYY-MM-DD Field length: 10 Sub data items: Verification level Code Value Level 0 Actual Epilepsy Data Standards 11

12 Level 1 Level 2 Estimated Not known Related data items: Associated Professional Details Epilepsy Data Standards 12

13 Educational Establishment Details Data Item Person Birth Date G Address (BS7666) G Postcode G UK Telephone Number G Educational Code Establishment Educational Establishment Name Educational Establishment Type Educational Establishment Attendance Status Educational Class Establishment Co-ordinated Support Plan (Additional Support for Learning) {Child Health} Educational Attainment Level (Primary 7) Educational Subject Educational Concerns Definition The date on which a person was born or is officially deemed to have been born, as recorded on the Birth Certificate. A collection of data describing the addressing of locations. The code allocated by the Post Office to identify a group of postal delivery points. A minimum standard is provided for holding a UK STD code. An extended set of component parts is provided for systems to hold more information. The unique identifier assigned to a nursery, primary school, secondary school, Special Educational Needs (SEN) establishment, further education college or university. The name of an educational establishment. The type of educational establishment, such as a primary school or place of further education. Records whether the person is currently attending the educational establishment or will be attending it in the future. Records the class or level in the Educational Establishment that the person currently attends. A plan to support a child who has additional support needs in terms of their education arising from one or more complex, or multiple factors. This describes the Primary 7 level achieved in a key subject of the national core curriculum An area of knowledge that is offered as part of the curriculum of an educational establishment An event, or series of events or attribute that affects or is thought to affect the wellbeing or safety of the child/ young person, leading to significant concern(s) being expressed in relation to their education by the health care professional 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. Note: The above data items have already been approved and are available in the Health & Social Care Data Dictionary. Note: The above data items are awaiting NCDDP Board approval as part of the Child Health Generic Standards Phase 2 currently out for consultation Epilepsy Data Standards 13

14 Basic Health Measurements Data Item Definition Height G Height in metres - 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) 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. Epilepsy Data Standards 14

15 Lifestyle Risk Factors Data Item Smoking Status G (Formally Tobacco and Nicotine Consumption Status) Non-specialist Tobacco and Nicotine Consumption Advice G Alcohol Drinking Status (Current) G Non-specialist Alcohol Consumption Advice G Physical Activity Status (Current) G Non-specialist Physical Activity Advice G Non-specialist Dietary Advice Definition The tobacco smoking status of the individual at the date of recording. Record of the tobacco and nicotine consumption advice given by a health care professional (who is not part of a Smoking Cessation Service). Record of the individual s current alcohol consumption in relation to prevailing guidelines, with reference to any past excessive alcohol consumption Record of the alcohol consumption advice given by a health care professional (who is not part of a specialist alcohol treatment service). All movements in everyday life, including work, recreation, exercise, and sporting activities (World Health Organization definition of physical activity Record of the physical activity advice given by a health care professional (who is not a qualified health and fitness professional). Record of the dietary advice given by a health care professional (who is not a qualified dietician). See Child Health Phase 2 currently out for consultation See Child Health Phase 2 currently out for consultation Cigarettes Smoked (number) Alcohol Units Consumed (number) 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. Epilepsy Data Standards 15

16 Family History Data Item Definition Family History of Specific For consultation Condition {Epilepsy} Family History * Generic to be developed Degree of Relative * Generic to be developed Relationship * Generic to be developed Family History Age at First * Generic to be developed Onset Family History Age at Death * Generic to be developed *This item is undergoing development as part of the Generic Data Standards Family History of Specific Condition {Epilepsy} Common name: Family History Definition: A record of whether or not the patient has a family history of a specific condition e.g. epilepsy, seizures 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 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 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 00 Unverified 01 Verified Related data item: Family History Degree of Relative Relationship Family History Age at First Onset Family History Age at Death 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 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 Epilepsy Data Standards 16

17 item from the patient s record. This item should be recorded with the degree of relative, using the Degree of Relative data item, although often only family history in first-degree relatives is documented as of interest to clinicians. The structure of this data item should be repeated for each specific condition. Lists of specific conditions will be developed through specialty specific datasets. Epilepsy specific family history conditions: Epilepsy Seizures Recording guidance: Systems must allow for recording of multiple occurrences of a specific family history in different relatives together with the degree of relative. *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. Personal History Data Item Definition Personal History of Specific For consultation Conditions {Epilepsy} Personal History (Conditions) For consultation {Epilepsy} Personal History * (Interventions) * Generic to be developed *This item is undergoing development as part of the Generic Data Standards Personal History of Specific Conditions {Epilepsy} Common name: 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 No No known diagnosis of specific condition. SCT specific code(s) SCT specific term(s) for presence of personal history of specific condition 99 Not known Patient known to have had specific condition diagnosed. Epilepsy Data Standards 17

18 Sub data item: Verification level 00 Unverified 01 Verified Related data items: Personal History (Conditions) 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 epilepsy it is important to document either the presence or the absence of seizures and whether they were epileptic related. For these specific conditions, the clinician should actively gather the information required by patient history making 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. Epilepsy specific conditions: Acquired Brain Injury Brain Tumour Encephalitis Learning Disability Meningitis Stroke Tuberose Sclerosis Seizures (not epilepsy related) 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) {Epilepsy} 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 Epilepsy Data Standards 18

19 Codes and values: SCT Term Any condition for which the patient is being treated 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: Severity: Chronicity: Left, right, bilateral, midline Mild, moderate, severe Acute, chronic, recurrent Related data items: Personal History of Specific Conditions {Epilepsy} 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 Intervention {Epilepsy} Definition: A record of whether or not the patient has a personal history of a specific procedure considered to be of relevance to a particular involvement with care services. Format: SNOMED Clinical Terms* Field length: minimum 18 Epilepsy Data Standards 19

20 Codes and values: * Code Value Explanatory Notes 00 None No known history of specified procedure SCT specific code(s) SCT specific term(s) for personal history of specific procedure 99 Not known Sub data item: Verification level 00 Unverified 01 Verified Related data items: Personal History (Conditions) Patient known to have had specific procedure performed. Further Information: This data item is intended for use for those procedures where it is necessary to know whether or not the patient has a personal history of the procedure, in other words documentation of the absence of a history of the procedure is as important as documentation of its presence. For these specific procedures, the clinician should actively gather the information required by patient history making 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 procedure. Epilepsy specific procedures: Vagal Nerve Stimulator Procedure Recording guidance: Systems must allow for recording of multiple occurrences of a specific procedure, with associated date(s) of intervention. *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 procedure 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 (Procedure). Personal Seizure History Data item Date of First Occurrence of Problem / Issue Seizure Occurrences (Number) Date of Diagnosis Syndrome Type (Epilepsy) Seizure Type (Epilepsy) Definition * Generic to be developed For consultation * Generic to be developed For consultation For consultation Epilepsy Data Standards 20

21 Seizure Frequency (Epilepsy) Status Epilepticus Episodes Status Epilepticus Type For consultation For consultation For consultation Seizure Occurrences (Number) Definition: A record of the total number of seizures the patient is known to have had in a specified interval of time. Format: Characters Field length: 2 Codes and values Code Value Not known Sub data item: Time interval: Since first onset Since diagnosis Since last consultation / review Related data items: Date of Diagnosis {Epilepsy} Date Last Seen By Associated Professional {Epilepsy} Recording Guidance: The number of occurrences should be related to the relevant period of time. This can be either the Sub data item above which relates to a specific event or can be a duration specified by the Related data item to allow recording of number of days, weeks, etc. Syndrome Type (Epilepsy) Main source of standard: International League Against Epilepsy (ILAE). Ref: See Appendix 2. Definition: A record of the type of epilepsy syndrome as defined by seizure type, age of onset, clinical and Electro encephalogram (EEG) findings, family history, response to therapy, and prognosis. Format: Characters Field length: 2 Code Value Explanatory notes 00 None 01 Autosomal dominant nocturnal frontal lobe epilepsy Epilepsy Data Standards 21

22 02 Benign childhood epilepsy with centrotemporal spikes 03 Benign familial neonatal seizures 04 Benign familial and non-familial infantile seizures 05 Benign myoclonic epilepsy in infancy 06 Childhood absence epilepsy For example, occipital and parietal lobe seizures 07 Dravet's syndrome 08 Early myoclonic encephalopathy 09 Early onset benign childhood occipital epilepsy (Panayiotopoulos type) 10 Epilepsy with continuous spike-andwaves during slow-wave sleep (other than LKS) 11 Epilepsy with generalized tonic-clonic seizures only 12 Epilepsy with myoclonic absences 13 Epilepsy with myoclonic-astatic seizures 14 HH syndrome 15 Idiopathic generalized epilepsies with variable phenotypes 16 Idiopathic photosensitive occipital lobe epilepsy 17 Juvenile absence epilepsy For example, supplementary motor seizures 18 Juvenile myoclonic epilepsy For example, mesial temporal lobe seizures 19 Late onset childhood occipital epilepsy (Gastaut type) 20 Landau-Kleffner syndrome 21 Lennox-Gastaut syndrome 22 Migrating partial seizures of infancy 23 Myoclonic status in nonprogressive encephalopathies 24 Ohtahara syndrome 25 Primary reading epilepsy 26 Progressive myoclonus epilepsies For example, temporo parieto occipital junction seizures 27 Reflex epilepsies 28 Startle epilepsy 29 Visual sensitive epilepsies 30 West syndrome 99 Not known Further information: Definitions of syndrome type can be found at or by phoning Epilepsy Scotland s freephone Helpline on Related data items: Seizure Type (Epilepsy) Epilepsy Data Standards 22

23 Seizure Type (Epilepsy) Source of Standard: International League Against Epilepsy (ILAE) See Appendix 2. Definition: A record of the type of epileptic seizure according to the set criteria of the International League Against Epilepsy (ILAE). Format: Characters Field length: 3 Codes and values: Code Value Subcode 00 None 01 Absence seizures A B C 02 Atonic seizures 03 Clonic seizures A B 04 Eyelid myoclonia A B 05 Focal motor seizures A 06 Focal sensory seizures 07 Gelastic seizures 08 Hemiclonic seizures 09 Massive bilateral myoclonus 10 Myoclonic atonic seizures 11 Myoclonic seizures 12 Negative myoclonus 13 Neocortical temporal lobe seizures B C D E F A B Sub-value Typical Atypical Myoclonic Without tonic features With tonic features Without absences With absences With elementary clonic motor signs With asymmetrical tonic motor seizures With typical (temporal lobe) automatisms With hyperkinetic automatisms With focal negative myoclonus With inhibitory motor seizures With elementary sensory symptoms With experiential sensory symptoms Explanatory notes For example, supplementary motor seizures Examples: mesial temporal lobe seizures Examples: occipital and parietal lobe seizures Examples: temporo parieto occipital junction seizures Epilepsy Data Standards 23

24 14 Reflex seizures in focal epilepsy syndromes 15 Reflex seizures in generalized epilepsy syndromes 16 Secondarily generalized seizures 17 Seizures of the posterior neocortex 18 Spasms 19 Tonic seizures 20 Tonic-clonic seizures 99 Not known Related data items: Seizure Frequency Syndrome Type (Epilepsy) Further information: Definitions of seizure type can be found at Recording guidance: IT systems should allow for the recording of multiple options. Seizure Frequency (Epilepsy) Definition: An indication of the frequency of epileptic seizures over a specified time period. Format: Characters Field length: 2 Codes and values: Code Value Explanatory Notes 00 Seizure free Seizure free for 12 months or more seizures per year Averaging up to 1 seizure per month seizures per month Averaging up to 1 seizure per week seizures a week Averaging up to 1 seizure per day 04 Daily seizures At least 1 seizure per day 05 Multiple seizures a day 2 or more seizures per day 99 Not known Related data items: Seizure Type (Epilepsy) Status Epilepticus Episodes Definition: A record of whether the patient has ever suffered episodes of Status Epilepticus. Epilepsy Data Standards 24

25 Format: Characters Field length: 2 Codes and values: Code Value 00 No 01 Yes 99 Not known Related data items: Status Epilepticus Type Status Epilepticus Type Definition: A record of the type of Status Epilepticus experienced by the patient. Format: Characters Field length: 2 Codes and values: Code Value 01 Convulsive 02 Non-convulsive 99 Not known Related data items: Status Epilepticus Episodes Recording guidance: Where a patient has had more than one status epilepticus episode, more than one type may apply. Epilepsy Data Standards 25

26 Medication Data item Definition Specific Medication Record Record of whether or not a specific medication was G prescribed for an individual as recommended in specific clinical guidelines. Reason Specific Medication A record of the reason why a specific medication was not Not Prescribed G prescribed Reason for Contraindication Record of the reason why a specific medication is in Prescribing Specific contraindicated. Medication G Allergies * *Generic to be developed (Patient Allergies, Adverse Reactions and Intolerances) Medication or Device Name The generic name by which a drug, preparation or device is known. Medication or Device Usage An indication of whether or not a specific drug, preparation or Status device is currently being taken or used. Date of Planned Start The proposed date on which a process or period of validity is planned to commence. Date of Planned Date Due to Complete, Planned End Date Completion Duration The period of time over which a process or period of validity occurs. Dosage A description of the quantity, frequency or preparation of a drug and also when it was given/taken. Route of Administration Describes the way in which a drug or preparation is given or used. 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. Note: The above data items are awaiting NCDDP Board approval as part of the Medication Data Standards. The NCDDP are developing generic data standards for allergies. This item has been included in the table above as the working group feel it is important to record which drugs the patient has an allergy to. The working group have identified the following specific drugs. Acetazolamide ACTH Bromide Carbamazepine Clobazam Clonazepam Ethosuximinde Gabapentin Lamotrigine Levitracitam Oxcarbazepine Phenobarbital Phenytoin Piracetam Pregabalin (no read code) Primidone Pyridoxine Sodium valproate Steroids Epilepsy Data Standards 26

27 Tiagabine Topiramate Vigabatrin Zonisamide (no read code) Medication Concordance Table Data Item Concordance Status Definition An indicator of whether or not a patient is taking/using a prescribed medication and/or following recommendations, guidance, advice or assistance as directed by the health care professional(s) or in accordance with the agreement between the patient and health care professional(s). Reason(s) for Medication Non- Concordance Type of Assistance Required to Facilitate Medication Concordance The reason(s) why a prescribed drug, preparation or device was/is not being taken/used by the patient as directed by the health care professional(s) or in accordance with the agreement between the patient and health care professional(s). The aid(s) or guidance required to ensure the prescribed drug, preparation or device was/is being taken/used by the patient as directed by the health care professional(s) or in accordance with the agreement between the patient and health care professional(s). Medication Advice G A record of whether any education and advice regarding medication is given to a patient by a health professional, and by what method(s). Note: The above data items are awaiting NCDDP Board approval as part of the Medication Data Standards. Epilepsy Data Standards 27

28 Management Details Data Item Definition Estimated Delivery The anticipated due date for the delivery of the baby. Date Emergency For consultation Management Community Learning For consultation Disability Team Supervision Education Advice For consultation Topic {Epilepsy} Education Advice For consultation Method Care Plan Created For consultation Pregnancy Status For consultation Drug Protocol For consultation Note: The above data items have already been approved and are available in the Health & Social Care Data Dictionary. Emergency Management {Epilepsy} Definition: A record of the common emergency treatment the patient received when required. Format: Characters Field length: 2 Codes and values: Code Value 01 Buccal Midazolam 02 Rectal Diazepam 98 Other, specify 99 Not known Recording guidance: Where 98 Other, specify is recorded, systems may be configured to include a text box to allow specification of emergency management. Community Learning Disability Team Supervision Definition: A record of whether the patient is under the supervision of a Community Learning Disability team. Format: Characters Field length: 2 Codes and values: Code Value 00 No 01 Yes 99 Not known Epilepsy Data Standards 28

29 Related data items: Personal History of Specified Condition {Epilepsy} Educational Advice Topic {Epilepsy} Definition: A record of the topics of education delivered to the patient, through a variety of media. Format: Characters Field length: 2 Codes and values: Code Value 00 None 01 Adherence 02 Alarms and monitors 03 Alcohol and recreational drugs 04 Antiepileptic drugs 05 Choice of drug 06 Classification of seizures 07 Contact details of national and local epilepsy organizations 08 Contraception 09 Driving regulations 10 Drug interactions 11 Education 12 Efficacy 13 Employment 14 Explanation of investigative procedures 15 Explanation of what epilepsy is 16 First Aid 17 Financial allowances 18 Free prescriptions 19 General Epilepsy Information 20 General guidelines 21 Genetics 22 Identity bracelets 23 Lack of sleep 24 Leisure 25 Lifestyle 26 Menopause 27 Missed doses 28 Parenting 29 Photosensitivity 30 Pre-conception 31 Pregnancy and breast feeding 32 Probable cause 33 Prognosis 34 Safety and appropriate restrictions Epilepsy Data Standards 29

30 35 Safety in the home 36 Seizure triggers 37 Side effects 38 Status Epilepticus (SE) 39 Stress 40 Sudden Unexpected Death in Epilepsy (SUDEP) 41 Syndrome 98 Other, specify 99 Not known Recording guidance: IT systems should allow for the recording of multiple options Education Advice (Non-specialist) Method(s) Definition: A record of by what method(s) any education advice has been given to a patient by a health professional. Format: Characters Field length: 3 Codes and values: Codes Values Subcodes Sub-values Explanatory Notes 00 None A Patient declined B Not indicated 01 Oral Advice A Individual A one to one intervention with the patient B Group An intervention delivered in a group setting 02 Written Advice e.g. patient information leaflets 03 Audiovisual Aids Includes educational video, DVD, etc 04 Exempted / Not appropriate 05 Not indicated 95 Patient declined 98 Other 99 Not known Related data items: Reason for No Intervention Recording guidance: IT systems should allow for the recording of multiple options Epilepsy Data Standards 30

31 Care Plan Created Definition: A record of whether or not a care plan was drawn up for the patient. Format: Characters Field length: 2 Codes and values: Code Value 00 No 01 Yes 99 Not known Sub data item: Verification: 00 Not verified 01 Verified Pregnancy Status Definition: A record of whether a female patient is or is not currently pregnant or is trying to become pregnant. Format: Characters Field length: 3 Codes and values: Code Value Sub-code Sub-value 00 Not Pregnant A Not actively trying to become pregnant B Actively trying to become pregnant 01 Pregnant 02 Possibly Pregnant Patient believes she may be pregnant but there is not yet a definitive test result to confirm pregnancy. 96 Not applicable Includes post-menopausal females, females known to be infertile. 97 Not disclosed 99 Not Known Further information: Possibly Pregnant should only be recorded on a temporary basis and should be updated once a definitive test result is received. Epilepsy Data Standards 31

32 Drug Protocol Definition: A record of whether or not a drug protocol was devised for the patient. Format: Characters Field length: 2 Codes and values: Code Value 00 No 01 Yes 99 Not known Sub data item: Verification: 00 Not verified 01 Verified Further information: As a minimum a protocol sets out the relevant drug treatment and titrations. Investigations Data Item Definition Investigation Record A record of whether or not an investigation has been planned or carried out. Investigation Type For consultation {Epilepsy} Investigation Location *Generic For Development Electro Encephalogram For consultation Investigation Type Investigation Results *Generic For Development 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. Investigation Type {Epilepsy} Definition: A broad coding of types of investigation which may be requested to assist with diagnosis. Format: Characters Field length: 3 Codes and values: Code Value Sub-code Sub-value 01 Neurological A Electroencephalogram (EEG) Epilepsy Data Standards 32

33 02 Cardiac 03 Radiology 04 Genetic 98 Other 99 Not known Z A B Z A B Z Other Electrocardiogram (ECG) 12-lead ECG Other Computerised tomography (CT) Magnetic resonance imaging (MRI) Other Related data items: Date of Referral Investigation Results Electro Encephalogram Investigation Type Common name: EEG Investigation Type Definition: A record of the type of Electro Encephalogram (EEG) performed. Format: Characters Field length: 2 Codes and values: Code Value 01 Standard 02 Sleep 03 Ambulatory 04 Video telemetry 05 Home video 98 Other 99 Not known Epilepsy Data Standards 33

34 Procedures Data item Surgical Assessment Status Surgery Decision Procedure Performed (Current) {Epilepsy} Definition For consultation For consultation For consultation Surgery Assessment Status Definition: A record of whether the patient has been assessed for a surgical procedure. Format: Characters Field length: 2 Codes and values: Code Value 00 No 01 Yes 02 Planned 99 Not known Related data item: Surgery Decision Surgery Decision Definition: A record of the decision following surgical assessment as to whether it is intended the patient undergo a surgical procedure. Format: Characters Field length: 2 Codes and values: Code Value 00 No 01 Yes 99 Not known Related data item: Surgery Assessment Status Epilepsy Data Standards 34