The person's details and contact information.
", "implementationGuidance": "The mandatory information in this section is person’s name, date of birth and address. There can be multiple addresses associated with a person including temporary and correspondence addresses. These are stored on the PDS.
Note that the Individual requirements section includes specific elements for accessible information requirements to support communication. It is recognised that some of the elements in this section are currently shared in a more granular way than currently defined in this information model. PRSB intends to address this in a later release of the information model.
", "informationType": "", "isComponent": true, "maximumMultiplicity": "1", "minimumMultiplicity": "1", "mro": "M", "name": "Person demographics", "relationshipType": "neither", "type": "group", "valueDomain": [ { "type": "" } ], "valueSets": [] }, { "items": [ { "items": [ { "description": "The name of the person's GP. If the person is registered with a GP practice, their usual GP name will be something volunteered by the person or their representative.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "GP name", "type": "item", "valueDomain": [ { "property": [ { "maxLength": "70" } ], "type": "string" } ], "valueSets": [], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/GP practice/GP practice record entry/GP name@2-build.2.0" }, { "description": "Name and address of the person's registered GP practice Registered GP practice details are available from the Person Demographics Service (PDS), or volunteered from the person or their representative. Include details of the practice name and address.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "GP practice details", "type": "item", "valueDomain": [ { "property": [ { "maxLength": "150" } ], "type": "text" } ], "valueSets": [], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/GP practice/GP practice record entry/GP practice details@2-build.2.0" }, { "description": "The identifier of the registered GP practice.", "maximumMultiplicity": "1", "minimumMultiplicity": "1", "mro": "M", "name": "GP practice identifier", "type": "item", "valueDomain": [ { "property": [ { "maxLength": "6" } ], "type": "string" } ], "valueSets": [ { "prefix": "NHS_DD", "use": "EXAM", "text": "General medical practice code (patient registration)", "expression": "https://datadictionary.nhs.uk/data_elements/general_medical_practice_code__patient_registration_.html?hl=general%2Cmedical%2Cpractice%2Ccode%2Cpatient%2Cregistration", "popUpText": "Details of the person's GP practice.
", "implementationGuidance": "A description of how you communicate normally including any communication aids you use, for example a hearing aid.
\nDescribe how you would like others to engage and communicate with you, including how you would like to be addressed.
\n ", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "How I communicate and how to communicate with me", "type": "item", "valueDomain": [ { "type": "text" } ], "valueSets": [], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/About me/How I communicate and how to communicate with me/How I communicate and how to communicate with me@2-build.2.0" } ], "description": "A description of how you communicate normally. ", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "How I communicate and how to communicate with me", "type": "group", "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/About me/How I communicate and how to communicate with me@2-build.2.0" }, { "items": [ { "description": "\n| \n \n \n \n \n A description covering what you are able to do, how you engage with others and how you feel on a typical day through to on a day when you are unwell or really unwell \n | \n
| \n \n \n \n \n \n
| \n
A description of how and when you want someone caring for you to support you.
\n\n
A description of what is also worth knowing about you for people caring or supporting you.
\n\n
About me
", "implementationGuidance": "Details of alerts.
", "implementationGuidance": "The legal information relating to the person.
", "implementationGuidance": "The safeguarding details of the person.
", "implementationGuidance": "The details of the person’s professional contacts.
", "implementationGuidance": "The details of the individual's personal contacts.
", "implementationGuidance": "Participation in research
", "implementationGuidance": "The details of the referral.
", "implementationGuidance": "The details of the person’s contact with a professional.
", "implementationGuidance": "Admission details
", "implementationGuidance": "Discharge details
", "implementationGuidance": "Details of future appointments.
", "implementationGuidance": "This is the vaccinations record entry.
\n \nThere may be 0 to many record entries under a section.
\n \nEach record entry is made up of a number of elements or data items.
\n ", "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Vaccinations record entry", "type": "group", "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Vaccinations/Vaccinations record entry@2-build.2.1" } ], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Vaccinations@2-build.2.1", "description": "Details of vaccinations.
", "implementationGuidance": "A condition that needs addressing and so is important for every professional to know about when seeing the person. Problems may include diagnoses, symptoms, and social or behavioural issues.
", "implementationGuidance": "Provides an indication of the degree to which a condition has been verified by clinical evidence i.e. confirmed, unconfirmed (including provisional or differential), refuted or entered-in-error.
", "implementationGuidance": "The date a diagnosis was made.
", "implementationGuidance": "The clinical status of the problem i.e. active (including recurrence or relapse) or inactive (including in remission or resolved).
", "implementationGuidance": "A date or estimated date that the problem began, recurred or relapsed.
", "implementationGuidance": "The date or estimated date the problem was resolved or in remission.
", "implementationGuidance": "The severity of the problem.
", "implementationGuidance": "The body site relevant to the problem.
", "implementationGuidance": "The laterality of the problem (left or right or bilateral).
", "implementationGuidance": "The staging system or classification.
", "implementationGuidance": "The stage of the disease where relevant.
", "implementationGuidance": "E.g. <64572001 |Disease| that include a stage of disease should be entered as a problem not here. E.g. 733139004 |Acute kidney failure stage 3 (disorder)| or 700378005 |Chronic kidney disease stage 3A (disorder)|
", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Stage of disease", "relationshipType": "specialisation", "type": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "<261612004 │Stages│", "expression": "", "popUpText": "The grading system or classification.
", "implementationGuidance": "E.g. < 371469007 |Histologic grade of neoplasm (observable entity)| + 277457005 |Histological grading systems (staging scale)|
", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Grading system", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [] }, { "items": [], "derivedFrom": "PRSB-Standards/WRIST-Problem-list/Problem list/Problem list record entry/Grade of disease@1-build.0.3", "description": "The grade of the disease where relevant.
", "implementationGuidance": "The status of the problem. This can be either active or inactive.
", "implementationGuidance": "The problem priority level. This can be either significant or minor.
", "implementationGuidance": "Description of the level of awareness the person and or their carer/family has regarding their diagnosis.
", "implementationGuidance": "Supporting text may be given covering the problem.
", "implementationGuidance": "This is a problem list record entry. There may be 0 to many record entries under this section. Each record entry is made up of a number of elements or data items.
", "implementationGuidance": "A summary of the problems (including diagnosed conditions) that require investigation or treatment.
", "implementationGuidance": "This is a seizure episode record entry for each individual seizure occurrence. There may be 0 to many record entries under this section. Each record entry describing the seizure is made up of a number of elements or data items.
This captures the information related to all seizures, including febrile seizures, provoked seizures, psychogenic non-epileptic seizures (PNES) or first unexplained seizure.
", "valueSets": [], "implementationGuidance": "The seizure episode record entry is a record of a particular seizure event. This could be recorded in a number of ways and applications. for example
A description of the seizure episode.
", "valueSets": [], "implementationGuidance": "This is a record of the source providing the description of episode. For example, this could be a school teacher, or a parent.
", "valueSets": [], "implementationGuidance": "The details of the individual's personal contacts.
", "implementationGuidance": "This section includes the personal contacts (e.g. family, friends, relatives etc). Comments should be used to share information such as if a particular contact should be called in an emergency etc.
This is a personal contacts record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.
", "implementationGuidance": "", "informationType": "Record", "items": [ { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Personal contacts/Personal contacts record entry/Name@1-build.12.1", "description": "The name of the personal contact.
", "implementationGuidance": "The relationship the personal contact has to the person, e.g. father, grandmother, family friend etc. Includes additional roles the person performs on behalf of the other (e.g. carer, next of kin, emergency contact, dependent, etc.).
", "implementationGuidance": "Contact details of the personal contact (e.g. telephone number, address, email address etc.).
", "implementationGuidance": "Notes on the significance of the personal contact to the person.
", "implementationGuidance": "The details of the person’s professional contacts.
", "implementationGuidance": "This section includes current and historic details of health and care professionals, teams or organisations involved in the care of the person. Third sector organisations can be included. The name of the person’s current care coordinator or key worker should be included here.
The name of the professional with responsibility for the care of the person.
", "implementationGuidance": "The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker, key worker, care home manager, care coordinator, LA hospital liaison person, care home contact, hospital clinician, Independent Mental Capacity Advocate (IMCA) etc.
", "implementationGuidance": "Where a role exists but no National Code is available the job role term can be provided as text. Additional job role terms for social care are listed in the Adult Social Care National Workforce Data Set (ASC-NWD) [ https://www.skillsforcare.org.uk/Adult-Social-Care-Workforce-Data/Adult-Social-Care-Workforce-Data-Set/Adult-Social-Care-Workforce-Data-Set.aspx ]. As of May 2025 the ASC-NWD Workplace / Staff Record job roles are:
Activities worker or co-ordinator
Administrative/Office staff not care-providing
Advice, Guidance and Advocacy
Allied Health Professional (not Occupational Therapist)
Ancillary staff not care-providing
Any children’s/young people’s job role
Assessment Officer
Care Co-ordinator [Use National Code 07058 - Care Coordinator]
Care Worker
Community, Support and Outreach Work
Data analyst
Data governance manager
Deputy Manager
Employment Support
First Line Management
IT and digital support
IT manager
IT service desk manager
Learning and development lead
Managers and staff care – related but not care – providing
Middle Management
Nursing Assistant
Nursing Associate [Use National Code 07047 - Nursing Associate]
Occupational Therapist Assistant
Occupational Therapist [Use National Code 04025 - Occupational Therapist]
Other job roles directly involved in providing care
Other job roles not directly involved in providing care
Registered Manager (Only CQC registered services)
Registered Nurse
Safeguarding & Reviewing Officer
Senior Care Worker
Senior Management
Social Worker [Use National Code 05007 - Social Worker]
Software developer
Supervisor
Support worker [Use National Code 07002 - Social Care Support Worker]
Team leader
", "prefix": "NHS_DD", "text": "JOB ROLE CODE", "use": "" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Professional contacts/Professional contacts record entry/Key worker@1-build.12.1", "description": "A flag that identifies the professional contact is the key worker assigned to the person.
", "implementationGuidance": "Y - Yes
N - No
", "prefix": "FHIR", "text": "Hl7VSYesNoIndicator", "use": "" } ] }, { "description": "The specialty of the professional e.g. physiotherapy, oncology, mental health etc.
", "implementationGuidance": "", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Speciality", "type": "item", "valueSets": [ { "expression": "https://www.datadictionary.nhs.uk/data_elements/activity_treatment_function_code.html?hl=activity%2Ctreatment%2Cfunction%2Ccode", "popUpText": "", "prefix": "NHS_DD", "text": "ACTIVITY TREATMENT FUNCTION CODE", "use": "" } ], "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Professional contacts/Professional contacts record entry/Speciality@1-build.12.1" }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Professional contacts/Professional contacts record entry/Team@1-build.12.1", "description": "The name of the team.
", "implementationGuidance": "The name of the organisation.
", "implementationGuidance": "Contact details of the professional (e.g. telephone number, email address etc.).
", "implementationGuidance": "The start date of the professional relationship with the person.
", "implementationGuidance": "The end date of the professional relationship with the person.
", "implementationGuidance": "Details about documents related to the person.
", "implementationGuidance": "This is a documents record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.
", "implementationGuidance": "", "informationType": "Event.Record", "items": [ { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Documentation location@1-build.12.0", "description": "The location of the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Documentation location", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/String@1-build.0.1" } ], "valueSets": [ { "prefix": "PPPP", "use": "EXAM", "text": "", "expression": "", "popUpText": "Free text or URL.
" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Confidentiality@1-build.12.0", "description": "The code specifying the level of confidentiality of the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Confidentiality", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "FHIR", "use": "EXAM", "text": "Confidentiality", "expression": "https://terminology.hl7.org/ValueSet-v3-Confidentiality.html", "popUpText": "L - low
M - moderate
N - normal
R - restricted
U - unrestricted
V - very restricted
" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Class@1-build.12.0", "description": "The document type e.g. report, summary, images, treatment plan, patient preferences, workflow.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Class", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "SNOMED_CT", "use": "RECOM", "text": "Clinical Document Indexing Standard - Document Type", "expression": "https://www.digihealthcare.scot/app/uploads/2025/04/CDI-Standard-V4.8-FINAL.pdf", "popUpText": "The title of the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "O", "name": "Document title", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Document name@1-build.12.0", "description": "The name of the document. This should align to the Clinical Document Indexing standard.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Document name", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "SNOMED_CT", "use": "RECOM", "text": "Clinical Document Indexing Standard - Document Subtype", "expression": "https://www.digihealthcare.scot/app/uploads/2025/04/CDI-Standard-V4.8-FINAL.pdf", "popUpText": "Where the document is a KOS document this field (designated typeCode) is used to carry the DICOM Imaging procedure: This attribute shall be populated by the XDS-I Imaging Document Source from a code in the Procedure Code Sequence (0008,1032) of the performed procedure with which the document is associated. Values may be found in a suitable DICOM browser.
" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Document media type@1-build.12.0", "description": "Media type of the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Document media type", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/String@1-build.0.1" } ], "valueSets": [ { "prefix": "IANA", "use": "EXAM", "text": "https://www.iana.org/assignments/media-types/media-types.xhtml", "expression": "https://www.iana.org/assignments/media-types/media-types.xhtml", "popUpText": "e.g. application/pdf, audio/mp4, image/jpeg, etc.
" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Service@1-build.12.0", "description": "The service that created the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "items": [], "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Service", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "^1127531000000102 |Services simple reference set|", "expression": "https://termbrowser.nhs.uk/?perspective=full&conceptId1=1127531000000102&edition=uk-edition&release=&server=https://termbrowser.nhs.uk/sct-browser-api/snomed&langRefset=999001261000000100,999000691000001104", "popUpText": "Comments associated with the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Comments", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "valueSets": [] } ], "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Documents record entry", "type": "group", "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry@1-build.12.0" } ], "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Documents (including correspondence, audio, video and images)", "relationshipType": "neither", "type": "group", "valueDomain": [ { "type": "" } ], "valueSets": [] } ], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Documents (including correspondence, audio and images)@2-build.2.1", "description": "Additional material linked to the seizure episode record that provides objective or corroborating information about the seizure event.
This could include video recording, audio recording, wearable device data, clinical documentation or patient/ carer diary entry.
", "implementationGuidance": "", "informationType": "", "isComponent": true, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Supporting evidence ", "relationshipType": "specialisation", "type": "group", "valueSets": [], "valueDomain": [ { "type": "" } ] }, { "name": "Seizure type", "mro": "R", "description": "This is the type of seizure experienced by the person.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "DRAFT", "text": "seizuretypeSCT_12122025", "expression": "", "popUpText": "Derived from the ILAE(International League Against Epilepsy seizure type definitions https://www.ilae.org/updated-classification-epileptic-seizures-2025
There will be additional concepts to describe Focal and Generalised seizures when these are released
1287622000\tNeonatal focal clonic epileptic seizure
1287619002\tNeonatal focal automatism epileptic seizure
1287621007\tNeonatal focal tonic epileptic seizure
1287620008\tNeonatal focal epileptic spasms
1287623005\tNeonatal focal epileptic spasms
1287624004\tNeonatal focal autonomic epileptic seizure
1287625003\tNeonatal focal behavioural arrest epileptic seizure
1287618005\tNeonatal focal sequential electro-clinical epileptic seizure
398665005 Vasovagal syncope
440443001 Reflex anoxic seizure
713013008 Breath holding spell
68978004 Hyperventilation
438113009 Convulsive syncope
870368003 Orthostatic intolerance
9651007 Long QT syndrome
788877005 Cardiac syncope
1222625002\tHypercyanotic spell due to congenital heart disease
301795004 Cyanotic attack
22058002 Inattention
11882005 Juvenile masturbation
112090005 Eidetic images
83943005 Temper tantrum
307050007 Out of body experience
225624000 Panic attack
276300008 Dissociative stupor
864171000000103\tNon-epileptic attack disorder
7011001 Hallucinations
50705009\tFactitious disorder
430893009\tSleep related rhythmic movement disorder
724752004\tHypnagogic hallucinations
58690002\tParasomnia
415238003\tREM sleep behaviour disorder
413638006\tBenign neonatal sleep myoclonus
445140006\tPeriodic leg movements of sleep
193042000\tCataplexy and narcolepsy
386783003\tTic
191992009\tRepetitive routines
609221008\tParoxysmal kinesigenic dyskinesia
609218006\tParoxysmal nonkinesigenic dyskinesia
763127004\tBenign paroxysmal tonic upgaze of childhood with ataxia
404689008\tAlternating hemiplegia
19557000\tHyperexplexia
230350000\tOpsoclonus-myoclonus syndrome
699314009\tMigraine with persistent visual aura
95656000\tFamilial hemiplegic migraine
719521002\tBenign paroxysmal torticollis of infancy
111541001\tBenign paroxysmal positional vertigo
18773000\tCyclical vomiting syndrome
446995005\tShuddering attacks
413638006\tBenign neonatal sleep myoclonus
51402000\tJittery newborn
230314007\tSandifer syndrome
400948003\tSpasmus nutans
271719001\tRaised intracranial pressure
699190008\tParoxysmal extreme pain disorder
698836007\tSpinal cord myoclonus
421455009\tEpisodic ataxia
421182009\tEpisodic ataxia type 1
420932006\tEpisodic ataxia type 2
718755009\tEpisodic ataxia type 3
718754008\tEpisodic ataxia type 4
718756005\tEpisodic ataxia type 5
718753002\tEpisodic ataxia type 6
718752007\tEpisodic ataxia type 7
773495009\tEpisodic ataxia with slurred speech
46808003\tMarie's cerebellar ataxia
" } ], "implementationGuidance": "The formal seizure type is expected to be defined by a specialist in epilepsy/neurology. Derived from the information provided by the patient, their carers, any witnesses or videos.
The ILAE (International League against Epilepsy) released an updated version of its description of seizure types. This is expected to be available in SNOMED CT mid way through 2026.
Welcome to the International League Against Epilepsy
", "informationType": "", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "derivedFrom": "", "isComponent": false, "items": [], "type": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-ips-datatypes/ips-datatypes/Coded Element@1-build.0.2" } ], "relationshipType": "specialisation" }, { "name": "Onset date", "mro": "R", "description": "A date/time or estimated date/time that the seizure began.
", "valueSets": [], "implementationGuidance": "The date/time or estimated date/time the seizure ended.
", "valueSets": [], "implementationGuidance": "The duration of the individual episode of seizure.
", "valueSets": [], "implementationGuidance": "The coded value of the duration of seizure.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "MAND", "text": "313289001 |Duration of seizure|", "expression": "", "popUpText": "The value of the duration of seizure.
", "valueSets": [], "implementationGuidance": "The laterality of the problem (left or right or bilateral).
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "^999000821000000100 |Laterality simple reference set|", "expression": "", "popUpText": "In the case of a focal seizure this would be the side of the body which is effected by the seizure
", "informationType": "", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "derivedFrom": "PRSB-Standards/WRIST-Problem-list/Problem list/Problem list record entry/Problem@1-build.0.4", "isComponent": false, "items": [], "type": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-ips-datatypes/ips-datatypes/Coded Element@1-build.0.2" } ], "relationshipType": "specialisation" }, { "name": "Sleep seizure", "mro": "R", "description": "An indication of whether the seizure episode occurred from sleep.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "RECOM", "text": "", "expression": "", "popUpText": "New SNOMED CT concepts required
" } ], "implementationGuidance": "The three possible statuses that should be captured for this data item are: Seizure from sleep, Seizure from awake, and Unknown whether from sleep or awake.
", "informationType": "Record", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "derivedFrom": "", "isComponent": true, "items": [], "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-ips-datatypes/ips-datatypes/Coded Element@1-build.0.2" } ], "relationshipType": "specialisation" }, { "name": "Trigger", "mro": "R", "description": "These are the factors reported to precipitate seizures. Precipitating factors are specific circumstances that trigger a seizure in a person with epilepsy, and they can include lifestyle factors like sleep deprivation, stress, missed medication, and alcohol or recreational drug use. Other triggers can be illness, flashing lights (photosensitivity), hormonal changes like the menstrual cycle, and even certain foods or dehydration.
", "valueSets": [], "implementationGuidance": "The coded value of the known trigger for seizure.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "DRAFT", "text": "seizuretriggersct_12122025", "expression": "", "popUpText": "401019004 \t\tTrigger factor for seizure
182838006 \t\tChange of medication
1269470004\tIndividual dose of drug or medicament not taken
129834002 \t\tNoncompliance with medication regimen
424540004\t\tDoes not follow recommended medication dosage
6131000124104 Medication taken at higher dose than recommended
6121000124102 Medication taken at lower dose than recommended
448176008\t\tUses less medication than prescribed
275928001 \t\tDrugs - partial non-compliance
275927006\t\tDrugs - total non-compliance
454161000124103 Noncompliance with medication regimen due to cognitive impairment
454211000124107 Noncompliance with medication regimen due to visual impairment
454631000124104 Refuses to discontinue medication
301345002 \t\tDifficulty sleeping
224960004 \t\tTired
60119000 \t\tExhaustion
130989002 \t\tSleep deprivation
219006 \t\t\tCurrent drinker
424848002\t\tRecreational drug user
73595000 \t\tStress
48694002 \t\tAnxiety
386661006 \t\tFever
39104002 \t\tIllness
422400008 \t\tVomiting
230444006 \t\tMenstrual epilepsy
83765003 \t\tBoredom
55350005 \t\tHungry
34095006 \t\tDehydration
724694006 \t\tHarmful pattern of use of caffeine
1263514008 \tSeizure due to migraine with aura
" } ], "implementationGuidance": "The trigger of the seizure.
", "valueSets": [], "implementationGuidance": "Further detail about the seizure trigger.
", "valueSets": [], "implementationGuidance": "The details of the resulting activity after a person experienced a seizure. This could include ambulance, emergency department, admission, or intensive care etc.
", "valueSets": [], "implementationGuidance": "This is a resulting activity record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.
", "valueSets": [], "implementationGuidance": "The source of attendance for unscheduled care.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "^999002991000000109 |Emergency care attendance source simple reference set (foundation metadata concept)|", "expression": "", "popUpText": "The health problem or issue experienced by the person resulting in their attendance. This may include disease state, medical condition, response and reactions to therapies. E.g., blackout, dizziness, chest pain, follow up from admission, falls, a specific procedure investigation or treatment.
", "valueSets": [], "implementationGuidance": "", "informationType": "", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "derivedFrom": "", "isComponent": false, "items": [], "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "relationshipType": "specialisation" }, { "name": "Procedure ", "mro": "R", "description": "The details of any procedure performed.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "^991261000000107 |Emergency care investigations simple reference set (foundation metadata concept)| OR\n\n^991271000000100 |Emergency care treatments simple reference set (foundation metadata concept)|", "expression": "", "popUpText": "The destination after discharge.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "^999003011000000105 | Emergency care discharge destination simple reference set (foundation metadata concept)", "expression": "", "popUpText": "This is the status of the discharge.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "^999003021000000104 | Emergency care discharge status simple reference set (foundation metadata concept)|", "expression": "", "popUpText": "The details about a person's medications and medical devices. This is where resulting rescue medication, emergency medication, or vagus nerve stimulation (VNS) wand usage is recorded.
", "implementationGuidance": "This is where the summary of a patients seizures are recorded.
", "valueSets": [], "implementationGuidance": "There should be one seizure summary record for each seizure type that a person has. i.e. if a person has 2 seizure types then there should be 2 seizure summary records.
", "informationType": "Event.Record", "minimumMultiplicity": "0", "maximumMultiplicity": "*", "derivedFrom": "", "isComponent": false, "items": [ { "name": "Nickname of seizure", "mro": "R", "description": "This is the non-clinical descriptor of the seizure type. This is generally a familiar, patient-friendly term of the seizure type, which is associated to the coded value.
", "valueSets": [], "implementationGuidance": "The type of seizure.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "DRAFT", "text": "seizuretypesct_12122025", "expression": "", "popUpText": "Derived from the ILAE(International League Against Epilepsy seizure type definitions https://www.ilae.org/updated-classification-epileptic-seizures-2025
There will be additional concepts to describe Focal and Generalised seizures when these are released
1287622000\tNeonatal focal clonic epileptic seizure
1287619002\tNeonatal focal automatism epileptic seizure
1287621007\tNeonatal focal tonic epileptic seizure
1287620008\tNeonatal focal epileptic spasms
1287623005\tNeonatal focal epileptic spasms
1287624004\tNeonatal focal autonomic epileptic seizure
1287625003\tNeonatal focal behavioural arrest epileptic seizure
1287618005\tNeonatal focal sequential electro-clinical epileptic seizure
398665005 Vasovagal syncope
440443001 Reflex anoxic seizure
713013008 Breath holding spell
68978004 Hyperventilation
438113009 Convulsive syncope
870368003 Orthostatic intolerance
9651007 Long QT syndrome
788877005 Cardiac syncope
1222625002\tHypercyanotic spell due to congenital heart disease
301795004 Cyanotic attack
22058002 Inattention
11882005 Juvenile masturbation
112090005 Eidetic images
83943005 Temper tantrum
307050007 Out of body experience
225624000 Panic attack
276300008 Dissociative stupor
864171000000103\tNon-epileptic attack disorder
7011001 Hallucinations
50705009\tFactitious disorder
430893009\tSleep related rhythmic movement disorder
724752004\tHypnagogic hallucinations
58690002\tParasomnia
415238003\tREM sleep behaviour disorder
413638006\tBenign neonatal sleep myoclonus
445140006\tPeriodic leg movements of sleep
193042000\tCataplexy and narcolepsy
386783003\tTic
191992009\tRepetitive routines
609221008\tParoxysmal kinesigenic dyskinesia
609218006\tParoxysmal nonkinesigenic dyskinesia
763127004\tBenign paroxysmal tonic upgaze of childhood with ataxia
404689008\tAlternating hemiplegia
19557000\tHyperexplexia
230350000\tOpsoclonus-myoclonus syndrome
699314009\tMigraine with persistent visual aura
95656000\tFamilial hemiplegic migraine
719521002\tBenign paroxysmal torticollis of infancy
111541001\tBenign paroxysmal positional vertigo
18773000\tCyclical vomiting syndrome
446995005\tShuddering attacks
413638006\tBenign neonatal sleep myoclonus
51402000\tJittery newborn
230314007\tSandifer syndrome
400948003\tSpasmus nutans
271719001\tRaised intracranial pressure
699190008\tParoxysmal extreme pain disorder
698836007\tSpinal cord myoclonus
421455009\tEpisodic ataxia
421182009\tEpisodic ataxia type 1
420932006\tEpisodic ataxia type 2
718755009\tEpisodic ataxia type 3
718754008\tEpisodic ataxia type 4
718756005\tEpisodic ataxia type 5
718753002\tEpisodic ataxia type 6
718752007\tEpisodic ataxia type 7
773495009\tEpisodic ataxia with slurred speech
46808003\tMarie's cerebellar ataxia
" } ], "implementationGuidance": "The formal seizure type is expected to be defined by a specialist in epilepsy/neurology. Derived from the information provided by the patient, their carers, any witnesses or videos.
The ILAE (International League against Epilepsy) released an updated version of its description of seizure types. This is expected to be available in SNOMED CT mid way through 2026.
Welcome to the International League Against Epilepsy
", "informationType": "", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "derivedFrom": "", "isComponent": false, "items": [ { "name": "Problem verification status", "mro": "R", "description": "Provides an indication of the degree to which a condition has been verified by clinical evidence i.e. confirmed, unconfirmed (including provisional or differential), refuted or entered-in-error.
", "valueSets": [ { "prefix": "FHIR", "use": "EXAM", "text": "https://hl7.org/fhir/R4/valueset-condition-ver-status.html", "expression": "https://hl7.org/fhir/R4/valueset-condition-ver-status.html", "popUpText": "An indication whether the seizure episode occurred during sleep
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "DRAFT", "text": "", "expression": "", "popUpText": "1366066004 |Epileptic seizures occurring only during sleep (finding)|
New SNOMED CT terms required for
Whether a patient has seizures from sleep has important consequences for their safety and ability to drive.
", "informationType": "Record", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "derivedFrom": "", "isComponent": false, "items": [], "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-ips-datatypes/ips-datatypes/Coded Element@1-build.0.2" } ], "relationshipType": "specialisation" }, { "name": "Clinical summary description", "mro": "R", "description": "The professional description of the summary of this type of episode experienced by the individual.
This is a free field description using validated semiological terms, where possible.
", "valueSets": [], "implementationGuidance": "The description of the summary of this type of episode experienced by the individual.
This is a free field description using plain English language to suit patient, carers, non health professionals.
", "valueSets": [], "implementationGuidance": "Additional material linked to the seizure episode record that provides objective or corroborating information about the seizure event.
This could include video recording, audio recording, wearable device data, clinical documentation or patient/ carer diary entry.
", "valueSets": [], "implementationGuidance": "Details about documents related to the person.
", "implementationGuidance": "This is a documents record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.
", "implementationGuidance": "", "informationType": "Event.Record", "items": [ { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Documentation location@1-build.12.0", "description": "The location of the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Documentation location", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/String@1-build.0.1" } ], "valueSets": [ { "prefix": "PPPP", "use": "EXAM", "text": "", "expression": "", "popUpText": "Free text or URL.
" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Confidentiality@1-build.12.0", "description": "The code specifying the level of confidentiality of the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Confidentiality", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "FHIR", "use": "EXAM", "text": "Confidentiality", "expression": "https://terminology.hl7.org/ValueSet-v3-Confidentiality.html", "popUpText": "L - low
M - moderate
N - normal
R - restricted
U - unrestricted
V - very restricted
" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Class@1-build.12.0", "description": "The document type e.g. report, summary, images, treatment plan, patient preferences, workflow.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Class", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "SNOMED_CT", "use": "RECOM", "text": "Clinical Document Indexing Standard - Document Type", "expression": "https://www.digihealthcare.scot/app/uploads/2025/04/CDI-Standard-V4.8-FINAL.pdf", "popUpText": "The title of the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "O", "name": "Document title", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Document name@1-build.12.0", "description": "The name of the document. This should align to the Clinical Document Indexing standard.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Document name", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "SNOMED_CT", "use": "RECOM", "text": "Clinical Document Indexing Standard - Document Subtype", "expression": "https://www.digihealthcare.scot/app/uploads/2025/04/CDI-Standard-V4.8-FINAL.pdf", "popUpText": "Where the document is a KOS document this field (designated typeCode) is used to carry the DICOM Imaging procedure: This attribute shall be populated by the XDS-I Imaging Document Source from a code in the Procedure Code Sequence (0008,1032) of the performed procedure with which the document is associated. Values may be found in a suitable DICOM browser.
" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Document media type@1-build.12.0", "description": "Media type of the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Document media type", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/String@1-build.0.1" } ], "valueSets": [ { "prefix": "IANA", "use": "EXAM", "text": "https://www.iana.org/assignments/media-types/media-types.xhtml", "expression": "https://www.iana.org/assignments/media-types/media-types.xhtml", "popUpText": "e.g. application/pdf, audio/mp4, image/jpeg, etc.
" } ] }, { "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry/Service@1-build.12.0", "description": "The service that created the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "items": [], "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Service", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "^1127531000000102 |Services simple reference set|", "expression": "https://termbrowser.nhs.uk/?perspective=full&conceptId1=1127531000000102&edition=uk-edition&release=&server=https://termbrowser.nhs.uk/sct-browser-api/snomed&langRefset=999001261000000100,999000691000001104", "popUpText": "Comments associated with the document.
", "implementationGuidance": "", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Comments", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "valueSets": [] } ], "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Documents record entry", "type": "group", "derivedFrom": "PRSB-Standards/WRIST-palliative_and_end_of_life_care/palliative_and_end_of_life_care/Documents (including correspondence, audio and images)/Documents record entry@1-build.12.0" } ], "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Documents (including correspondence, audio, video and images)", "relationshipType": "neither", "type": "group", "valueDomain": [ { "type": "" } ], "valueSets": [] } ], "type": "", "valueDomain": [ { "type": "" } ], "relationshipType": "specialisation" }, { "name": "Seizure onset date", "mro": "R", "description": "A date or estimated date that the specific seizure type began.
", "valueSets": [], "implementationGuidance": "The date of the last seizure of this type experienced by the individual.
", "valueSets": [], "implementationGuidance": "The coded value for the last seizure.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "MAND", "text": "712814005 |Date of last seizure|", "expression": "", "popUpText": "The date of the last seizure episode.
", "valueSets": [], "implementationGuidance": "This is how often the person experiences seizures, such as the episodes per time period.
", "valueSets": [], "implementationGuidance": "May be ascertained from multiple sources (incl. patient or proxy seizure diary)
To be captured for each of the following seizure types:
(A) Motor predominant seizure of generalized, focal, or undetermined onset that involves impairment or loss of awareness (any combination of tonic & clonic and atonic).
(B) Motor predominant seizure of generalized, focal, or undetermined onset that does not involve loss of awareness (focal motor, myoclonic, spasms)
(C) Other seizures of generalized, focal, or undetermined onset that involve impairment of awareness as their primary manifestations (e.g. absence)
(D) Other (e.g. pure sensory seizures)
(E) Unclassifiable seizures (e.g. if unclear or no eyewitness account)
1= Multiple per day but not quantified
2= Multiple per day with more than 50 seizures (i.e. ≥50 most days)
3= Multiple per day with more than 10 seizures (i.e., ≥10 but <50 per day most days)
4= Multiple per day but less than 10 seizures(i.e., 4 days per week with ≥2 seizures)
5= Daily (i.e., 4 or more days per week)
6= Weekly but not daily (i.e., 1–3 per week)
7= Monthly but not weekly (i.e., 1–3 per month)
8= At least once per year, but not every month (i.e., 10 or fewer in past 12 months)
9= Less than once per year
10= Frequency not well defined but less than daily
999= Unknown
", "informationType": "", "minimumMultiplicity": "0", "maximumMultiplicity": "*", "derivedFrom": "", "isComponent": false, "items": [], "type": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-ips-datatypes/ips-datatypes/Text@1-build.0.1" } ], "relationshipType": "specialisation" }, { "name": "Seizure frequency summary ", "mro": "R", "description": "The summary of the seizures experienced across a time period.
", "valueSets": [], "implementationGuidance": "The start date of seizure frequency observation.
", "valueSets": [], "implementationGuidance": "The end date of seizure frequency observation.
", "valueSets": [], "implementationGuidance": "The number of seizures experienced in a defined time period.
", "valueSets": [], "implementationGuidance": "The coded value for the seizure frequency.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "MAND", "text": "170707004 |Fit frequency|", "expression": "", "popUpText": "The number of seizures occured.
", "valueSets": [], "implementationGuidance": "The unit of time against the number of seizures. For example, day, week, month, year etc.
", "valueSets": [], "implementationGuidance": "The typical duration of the person's seizures.
", "valueSets": [], "implementationGuidance": "May be ascertained from multiple sources (incl. seizure diary)
", "informationType": "", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "derivedFrom": "", "isComponent": false, "items": [], "type": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Period@1-build.0.1" } ], "relationshipType": "specialisation" }, { "name": "Maximum duration to date", "mro": "R", "description": "The maximum duration of a seizure to date.
", "valueSets": [], "implementationGuidance": "These are the factors reported to precipitate seizures. Precipitating factors are specific circumstances that trigger a seizure in a person with epilepsy, and they can include lifestyle factors like sleep deprivation, stress, missed medication, and alcohol or recreational drug use. Other triggers can be illness, flashing lights (photosensitivity), hormonal changes like the menstrual cycle, and even certain foods or dehydration.
", "valueSets": [], "implementationGuidance": "The coded value of the known trigger for seizure.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "DRAFT", "text": "seizuretriggersct_12122025", "expression": "", "popUpText": "401019004 \t\tTrigger factor for seizure
182838006 \t\tChange of medication
1269470004\t Individual dose of drug or medicament not taken
129834002 \t\tNoncompliance with medication regimen
424540004 \t\tDoes not follow recommended medication dosage
6131000124104 \t\tMedication taken at higher dose than recommended
6121000124102\t\t Medication taken at lower dose than recommended
448176008\t\t\t Uses less medication than prescribed
275928001 \t\tDrugs - partial non-compliance
275927006 \t\tDrugs - total non-compliance
454161000124103 \t\tNoncompliance with medication regimen due to cognitive impairment
454211000124107\t\t Noncompliance with medication regimen due to visual impairment
454631000124104\t\t Refuses to discontinue medication
301345002 \t\tDifficulty sleeping
224960004 \t\tTired
60119000\t Exhaustion
130989002 \t\tSleep deprivation
219006\t Current drinker
424848002 \t\tRecreational drug user
73595000\t\t Stress
48694002 \t\tAnxiety
386661006 \t\tFever
39104002 \t\tIllness
422400008 \t\tVomiting
230444006 \t\tMenstrual epilepsy
83765003 \t\tBoredom
55350005 \t\tHungry
34095006 \t\tDehydration
724694006 \t\tHarmful pattern of use of caffeine
1263514008 \tSeizure due to migraine with aura
" } ], "implementationGuidance": "The trigger of the seizure.
", "valueSets": [], "implementationGuidance": "Further detail about the seizure trigger.
", "valueSets": [], "implementationGuidance": "This section captures the information about epilepsy diagnosis. This is expected to be authored by an epilepsy specialist.
This is an epilepsy record entry. There may be 0 to 1 record entry under this section. Each record entry is made up of a number of elements or data items.
", "valueSets": [], "implementationGuidance": "The diagnosis of epilepsy recorded.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "MAND", "text": "84757009 |Epilepsy (disorder)|", "expression": "", "popUpText": "84757009 Epilepsy
" } ], "implementationGuidance": "An epilepsy specialist will define whether a person has epilepsy or suspected epilepsy. They may also state that a person does not have epilepsy.
", "informationType": "", "minimumMultiplicity": "1", "maximumMultiplicity": "1", "derivedFrom": "", "isComponent": false, "items": [ { "name": "Problem verification status", "mro": "M", "description": "Provides an indication of the degree to which a condition has been verified by clinical evidence i.e. confirmed, unconfirmed (including provisional or differential), refuted or entered-in-error.
", "valueSets": [ { "prefix": "FHIR", "use": "EXAM", "text": "https://hl7.org/fhir/R4/valueset-condition-ver-status.html", "expression": "https://hl7.org/fhir/R4/valueset-condition-ver-status.html", "popUpText": "The type of epilepsy syndrome the person has been diagnosed with.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "DRAFT", "text": "epilepsysyndromesct_14122025", "expression": "", "popUpText": "38281008 \t\tSelf-limited neonatal epilepsy
230410004 \t\tSelf-limited familial neonatal epilepsy
1231282002 \tSelf-limited familial neonatal-infantile epilepsy
1237571004 \tSelf-limited familial infantile epilepsy
699688008 \t\tGenetic epilepsy with febrile seizures plus
192990004 \t\tMyoclonic epilepsy in infancy
1275631007\t Developmental and epileptic encephalopathy
723125008\t\t Epileptic encephalopathy
230429005 \t\tEarly infantile epileptic encephalopathy with suppression bursts
784345005 \t\tEpilepsy of infancy with migrating focal seizures
1340127006 \tInfantile epileptic spasms syndrome
230437002 \t\tDravet syndrome
15523002 \t\tSelf-limited focal epilepsy
44145005 \t\tSelf-limited epilepsy with centrotemporal spikes
230387008 \t\tSelf-limited epilepsy with autonomic seizures
230388003 \t\tChildhood occipital visual epilepsy
1335933003 \tPhotosensitive occipital lobe epilepsy
1260407007 \tGenetic generalised epilepsy
716278005 \t\tEpilepsy with eyelid myoclonia
230422001 \t\tEpilepsy with myoclonic absence
50866000 \t\tChildhood absence epilepsy
230421008 \t\tEpilepsy with myoclonic-atonic seizures
230418006 \t\tLennox-Gastaut syndrome
230439004 \t\tEpilepsy with continuous spike wave during slow-wave sleep
725413002 \t\tFebrile infection related epilepsy syndrome
230407006 \t\tHemiconvulsion-hemiplegia-epilepsy syndrome
36803009 \t\tIdiopathic generalised epilepsy
6204001 \t\tJuvenile myoclonic epilepsy
230413002 \t\tJuvenile absence epilepsy
230414008 \t\tEpilepsy with generalised tonic-clonic seizures alone
230381009 \t\tFocal epilepsy
1332160004 \tSleep-related hypermotor epilepsy
770405003 \t\tFamilial mesial temporal lobe epilepsy
1332158001 \tEpilepsy with auditory features
764522009 \t\tFamilial focal epilepsy with variable foci
1260117009 \tCombined focal and generalised epilepsy
7689009 \t\tReading seizure
230191005\t\t Rasmussen syndrome
267581004\t\t Progressive myoclonic epilepsy
230425004 \t\tLafora disease
783055005 \t\tProgressive myoclonic epilepsy type 5
783062001\t\t Progressive myoclonic epilepsy type 6
1208939001\t Progressive myoclonic epilepsy type 7
783139000 \t\tProgressive myoclonic epilepsy type 8
1228857005 \tProgressive myoclonic epilepsy type 9
763349002 \t\tProgressive myoclonic epilepsy with dystonia
702326000 \t\tProgressive myoclonus epilepsy with ataxia
193021002 \t\tCursive (running) epilepsy
230453004 \t\tDecision-making epilepsy
721088003 \t\tDEND syndrome
230441003 \t\tDrug-induced epilepsy
230450001 \t\tEating epilepsy
763534009 \t\tHot water reflex epilepsy
1343613004\t Insular epilepsy
230393000 \t\tLateral temporal lobe epilepsy
784345005 \t\tMalignant migrating partial seizures of infancy
230444006\t\t Menstrual epilepsy
230404004\t\t Occipital lobe epilepsy
230403005 \t\tParietal lobe epilepsy
734434007 \t\tPyridoxine-dependent epilepsy
763632004 \t\tStartle epilepsy
193000002 \t\tTemporal lobe epilepsy
763622006 \t\tThinking epilepsy
230452009\t\t Toothbrushing epilepsy
230448009\t\t Writing epilepsy
" } ], "implementationGuidance": "Provides an indication of the degree to which a condition has been verified by clinical evidence i.e. confirmed, unconfirmed (including provisional or differential), refuted or entered-in-error.
", "valueSets": [ { "prefix": "FHIR", "use": "", "text": "https://hl7.org/fhir/R4/valueset-condition-ver-status.html", "expression": "https://hl7.org/fhir/R4/valueset-condition-ver-status.html", "popUpText": "The underlying cause or trigger for the development of epilepsy in the person.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "epilepsyaetiologysct_15122025", "expression": "", "popUpText": "76880004 \t\tAngelman syndrome
14091009 \t\t12p partial trisomy syndrome
699254009 \t\t15q13.3 microdeletion
699306003 \t\t1p36 deletion syndrome
403757004 \t\tAplasia cutis in Chromosome 4 short-arm deletion syndrome (Wolf-Hirschhorn)
1259087007\tAutoimmune encephalitis caused by N-methyl-D-aspartate receptor antibody
95883001 \t\tBacterial meningitis
445359003 \tBacterial meningoencephalitis
8808004 \t\t\tBiotinidase deficiency
1237417007 \tCAD-CDG - carbamoyl-phosphate synthetase 2, aspartate transcarbamylase, and dihydroorotase congenital disorder of glycosylation 722386009 \t\tCeliac disease with epilepsy and cerebral calcification syndrome
234142008 \t\tCerebral arteriovenous malformation
711403001\t\tCerebral folate transport deficiency
53622003 \t\tCerebral malaria
230690007\t\tCerebrovascular accident
768663003 \t\tCLCN2-related leucoencephalopathy
1230376005\tCNTNAP2-related developmental and epileptic encephalopathy
778060000 \t\tCOL4A1-related familial vascular leucoencephalopathy
1172844009 \tCombined oxidative phosphorylation defect type 27
41040004 \t\tComplete trisomy 21 syndrome
773230003 \t\tCDKL5 developmental and epileptic encephalopathy
187148002 \t\tCysticercosis of central nervous system
28944009 \t\tCytomegalovirus infection
124239003 \t\tDeficiency of guanidinoacetate methyltransferase
124174008 \t\tDeficiency of pyridoxamine-phosphate oxidase
270889005 \t\tDeletion of long arm of chromosome 18
1196837008 \tDysembryoplastic neuroepithelial neoplasm of brain
770431001 \t\tEarly-onset epileptic encephalopathy and intellectual disability due to GRIN2A mutation
733082001 \t\tEarly-onset Lafora body disease
778029000\t\tFASTKD2-related infantile mitochondrial encephalomyopathy
1237619001\tFatty acyl-CoA reductase 1 deficiency
1348304006 \tFibrosis, neurodegeneration, cerebral angiomatosis syndrome
717276003 \t\tFolinic acid responsive developmental and epileptic encephalopathy
702450004 \t\tFOXG1 syndrome
613003\t\t\tFragile X syndrome
87191000119100 Ganglioglioma
445252005\t\tGlucose transporter protein type 1 deficiency syndrome
253170008 \t\tHemimegalencephaly
702783007 \t\tHeterozygous protocadherin 19 gene mutation detected
360369003\t\tHolocarboxylase synthase deficiency
86406008 \t\tHuman immunodeficiency virus infection
766932005 \t\tHypothalamic hamartoma with gelastic seizure
230791000 \t\tHypothalamic neuronal hamartoma
703300001 \t\tHypoxic ischemic encephalopathy
10087007 \t\tInfection caused by Schistosoma
406619001\t\tInfection caused by Toxocara
723332005 \t\tIsodicentric chromosome 15 syndrome
39925003 \t\tJuvenile myopathy, encephalopathy, lactic acidosis, stroke
778001003\t\tKCNQ2 developmental and epileptic encephalopathy
22053006 \t\tKlinefelter syndrome
763794005\t\tLimbic encephalitis with leucine-rich glioma-inactivated 1 antibodies
204036008\t\tLissencephaly
770560008\t\tLissencephaly due to LIS1 mutation
718759003\t\tLissencephaly due to TUBA1A (tubulin alpha 1A) mutation
253154006\t\tLocalized cortical dysplasia
23502006\t\tLyme disease
1269516003\tLyme neuroborreliosis
1296869000 \tMECP2 related disorder
770643005 \t\tMesial temporal lobe epilepsy with hippocampal sclerosis
4945003 \t\t\tMicrogyria
253148005 \t\tMiller Dieker syndrome
240096000\t\tMitochondrial cytopathy
703535000 \t\tMowat-Wilson syndrome
230426003\t\tMyoclonic epilepsy with ragged red fibres
448041008\t\tNeuronal heterotopia
737037004\t\tPIK3CA related overgrowth syndrome
702344008 \t\tPitt-Hopkins syndrome
65705009 \t\tPorencephalic cyst
724576005 \t\tPyridoxal 5-phosphate dependent epilepsy
734434007\t\tPyridoxine-dependent epilepsy
230191005 \tRasmussen syndrome
702345009\t\t Ring chromosome 14 syndrome
23686004\t\t Ring chromosome 20 syndrome
1222659003 \tRNF13-related severe early-onset epileptic encephalopathy
253159001 \t\tSchizencephaly
778002005 \t\tSCN2A encephalopathy
765170001 \t\tSCN8A developmental and epileptic encephalopathy
771516000 \t\tSolute carrier family 35 member A2 congenital disorder of glycosylation
771271000 \t\tSteroid-responsive encephalopathy associated with autoimmune thyroiditis
19886006 \t\tSturge-Weber syndrome
768666006\t\t STXBP1 developmental and epileptic encephalopathy
1222656005\tSYNGAP1-related developmental and epileptic encephalopathy
9527009 \t\t\tTetrasomy 12p syndrome
192701001\t\t Toxoplasma encephalitis
127295002 \t\tTraumatic brain injury
56717001 \t\tTuberculosis
7199000 \t\tTuberous sclerosis syndrome
230423006\t\t Unverricht-Lundborg syndrome
34476008\t\t Viral encephalitis
717223008\t\t X-linked epilepsy with learning disability and behaviour disorder syndrome
725163002 \t\tX-linked spasticity, intellectual disability, epilepsy syndrome
88469006 \t\tZellweger syndrome
238061001 \t\tNeonatal adrenoleukodystrophy
" } ], "implementationGuidance": "Provides an indication of the degree to which a condition has been verified by clinical evidence i.e. confirmed, unconfirmed (including provisional or differential), refuted or entered-in-error.
", "valueSets": [ { "prefix": "FHIR", "use": "", "text": "https://hl7.org/fhir/R4/valueset-condition-ver-status.html", "expression": "https://hl7.org/fhir/R4/valueset-condition-ver-status.html", "popUpText": "A condition that needs addressing and so is important for every professional to know about when seeing the person. Problems may include diagnoses, symptoms, and social or behavioural issues.
", "implementationGuidance": "Provides an indication of the degree to which a condition has been verified by clinical evidence i.e. confirmed, unconfirmed (including provisional or differential), refuted or entered-in-error.
", "implementationGuidance": "The date a diagnosis was made.
", "implementationGuidance": "The clinical status of the problem i.e. active (including recurrence or relapse) or inactive (including in remission or resolved).
", "implementationGuidance": "A date or estimated date that the problem began, recurred or relapsed.
", "implementationGuidance": "The date or estimated date the problem was resolved or in remission.
", "implementationGuidance": "The severity of the problem.
", "implementationGuidance": "The body site relevant to the problem.
", "implementationGuidance": "The laterality of the problem (left or right or bilateral).
", "implementationGuidance": "The staging system or classification.
", "implementationGuidance": "The stage of the disease where relevant.
", "implementationGuidance": "E.g. <64572001 |Disease| that include a stage of disease should be entered as a problem not here. E.g. 733139004 |Acute kidney failure stage 3 (disorder)| or 700378005 |Chronic kidney disease stage 3A (disorder)|
", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Stage of disease", "relationshipType": "specialisation", "type": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "<261612004 │Stages│", "expression": "", "popUpText": "The grading system or classification.
", "implementationGuidance": "E.g. < 371469007 |Histologic grade of neoplasm (observable entity)| + 277457005 |Histological grading systems (staging scale)|
", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Grading system", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [] }, { "items": [], "derivedFrom": "PRSB-Standards/WRIST-Problem-list/Problem list/Problem list record entry/Grade of disease@1-build.0.4", "description": "The grade of the disease where relevant.
", "implementationGuidance": "The status of the problem. This can be either active or inactive.
", "implementationGuidance": "The problem priority level. This can be either significant or minor.
", "implementationGuidance": "Description of the level of awareness the person and or their carer/family has regarding their diagnosis.
", "implementationGuidance": "Supporting text may be given covering the problem.
", "implementationGuidance": "This is a problem list record entry. There may be 0 to many record entries under this section. Each record entry is made up of a number of elements or data items.
", "implementationGuidance": "A summary of the problems (including diagnosed conditions) that require investigation or treatment.
This section records medical, psychological, or developmental conditions that co-exist alongside epilepsy. Comorbidities are distinct from seizure episodes or the epilepsy diagnosis itself, but they may significantly influence the presentation, management, prognosis, and outcomes of epilepsy.
", "implementationGuidance": "This section should link both the Problem list/ Diagnoses section of the record, so that comorbidities can be addressed in care coordination.
The information must be recorded using SNOMED CT codes that align with national terminology guidance.
This section must support multiple comorbidities per patient, with the ability to record each separately.
This section should allow linking of comorbidity data to both the epilepsy diagnosis section and the problem list in the patient record.
This section should enable linkage to structured assessments (e.g., mental health risk assessments, learning disability records).
", "informationType": "Event.Record", "isComponent": true, "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Comorbidity type", "relationshipType": "specialisation", "type": "group", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "", "expression": "", "popUpText": "<<406506008 |Attention deficit hyperactivity disorder (disorder)|
<<35919005 |Pervasive developmental disorder (disorder)|
248041005 |Challenging behavior (finding)|
48694002 |Anxiety (finding)|
<<197480006 |Anxiety disorder (disorder)|
<<35489007 |Depressive disorder (disorder)|
<<128188000 |Cerebral palsy (disorder)|
34713006 |Vitamin D deficiency (disorder)|
<<110359009 |Intellectual disability (disorder)|
" } ], "valueDomain": [ { "type": "" } ] } ], "derivedFrom": "PRSB-Standards/WRIST-Problem-list/Problem list@1-build.0.3", "description": "The record of seizure descriptions and summary, epilepsy diagnoses, and important comorbidities.
", "implementationGuidance": "The details about the clinical, functional, and quality-of-life impact of epilepsy and its management. This section complements the Epilepsy formulation.
", "valueSets": [], "implementationGuidance": "This is the treatment outcome record entry. There may be 0 to many record entries under treatment outcome.
Each record entry is made up of a number of elements or data items.
", "valueSets": [], "implementationGuidance": "This section captures a summary of the review of all medications prescribed for the management of epilepsy. It includes an overall assessment of current treatment effectiveness, seizure control, adherence, tolerability, and any concerns raised by the person or clinician. The review supports shared decision-making about ongoing therapy, potential adjustments, and future management plans.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "RECOM", "text": "401062003 |Epilepsy medication review|", "expression": "", "popUpText": "This captures detailed information for each medication included in the epilepsy medication review. It records treatment response, adherence to prescribed doses, effectiveness in seizure control, and any reported side effects or adverse events. It may also include notes on dose modifications, discontinuation, or introduction of new medications following clinical discussion.
", "valueSets": [], "implementationGuidance": "This section captures a review of the person’s current and potential treatments for epilepsy. It includes an assessment of medication efficacy and tolerability, as well as consideration of alternative or adjunctive therapies.
", "valueSets": [], "implementationGuidance": "These may include surgical interventions (e.g., resective surgery, laser ablation), neuromodulation therapies such as vagus nerve stimulation (VNS) or deep brain stimulation (DBS), dietary approaches like the ketogenic or modified Atkins diet, and psychological or lifestyle interventions. The review should document discussions about treatment goals, risks and benefits, suitability for further specialist referral, and shared decision-making outcomes.
", "informationType": "", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "derivedFrom": "", "isComponent": false, "items": [], "type": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-ips-datatypes/ips-datatypes/Text@1-build.0.2" } ], "relationshipType": "specialisation" } ], "type": "", "valueDomain": [ { "type": "" } ], "relationshipType": "specialisation" }, { "name": "Sudden unexpected death in epilepsy (SUDEP) management record entry", "mro": "R", "description": "This is an sudden unexpected death in epilepsy record entry. There may be 0 to many record entry/entries under a section. Each record entry is made up of a number of elements or data items.
This section records the assessment, monitoring, and management of sudden unexpected death in epilepsy (SUDEP( risk for patients with epilepsy. SUDEP is defined as the sudden, unexpected, non-traumatic, and non-drowning death of a person with epilepsy, with or without evidence of a seizure, in which post-mortem examination does not reveal a structural or toxicological cause of death.
", "informationType": "Event.Record", "minimumMultiplicity": "0", "maximumMultiplicity": "*", "derivedFrom": "", "isComponent": false, "items": [ { "name": "SUDEP risk assessment completed", "mro": "M", "description": "This captures whether SUDEP risk assessment has been completed.
", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "1025681000000103 | Provision of information about (SUDEP) sudden unexpected death in epilepsy|", "expression": "", "popUpText": "Details of the person's assessments
", "implementationGuidance": "", "informationType": "", "isComponent": true, "items": [ { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry@1-build.0.3", "description": "This is the assessments record entry. There may be 0 to many record entry/entries under a section. Each record entry is made up of a number of elements or data items.", "items": [ { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Date@1-build.0.3", "description": "The date the assessment was done.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Date", "type": "item", "valueDomain": [ { "property": [ { "timeStampPrecision": "YMDHM" } ], "type": "datetime" } ], "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Assessment type@1-build.0.3", "description": "The type of the assessment e.g. social care needs assessment.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessment type", "type": "item", "valueDomain": [ { "property": [ { "maxLength": "150" } ], "type": "text" } ], "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Assessment summary@1-build.0.3", "description": "The summary of the assessment", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessment summary", "type": "item", "valueDomain": [ { "property": [ { "maxLength": "250" } ], "type": "text" } ], "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment@1-build.0.3", "description": "Details of the structured assessment.", "items": [ { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Structured assessment name@1-build.0.3", "description": "Structured assessment name e.g. New York Heart Failure, Glasgow Coma scale, Activities of Daily Living (ADL) etc.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Structured assessment name", "type": "item", "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Assessment score@1-build.0.3", "description": "The structured assessment score.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessment score", "type": "item", "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Assessment value@1-build.0.3", "description": "The structured assessment value.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessment value", "type": "item", "valueDomain": [ { "type": "quantity" } ], "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Subscale score@1-build.0.3", "description": "The subscale score of the structured assessment.", "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Subscale score", "type": "item", "valueSets": [] }, { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Subscale value@1-build.0.3", "description": "The subscale value of the structured assessment.", "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Subscale value", "type": "item", "valueDomain": [ { "type": "quantity" } ], "valueSets": [] } ], "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Structured assessment", "type": "group" }, { "derivedFrom": "PRSB-Standards/WRIST-epilepsy-information-standard/epilepsy-information-standard/Assessments/Assessments record entry/Comment@1-build.0.3", "description": "Supporting text may be given regarding the assessment.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Comment", "type": "item", "valueDomain": [ { "type": "string" } ], "valueSets": [] } ], "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Assessments record entry", "type": "group" } ], "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessments", "relationshipType": "neither", "type": "group", "valueSets": [] }, { "name": "SUDEP risk level ", "mro": "M", "description": "This is the categorisation of risk. For example, low, medium, high, or unknown.
", "valueSets": [], "implementationGuidance": "Any strengths and assets the person has relating to their goals and hopes about their health and well-being. This could be derived from the assessment of the person e.g. 300738008 |Able to participate in leisure activities (finding)|
", "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Strengths", "type": "group", "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Care and support plan/Strengths@2-build.2.1", "informationType": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "relationshipType": "specialisation", "isComponent": false, "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "1127601000000107 |Healthcare matters simple reference set|", "expression": "", "popUpText": "Details of the person needs, concerns or problems. This can include any supplementary or personalised information that relates to the person's needs, concerns, and problems,
The full name of the person in text representation.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Person full name", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Person Name@1-build.0.1" } ], "valueSets": [ { "prefix": "NHS_DD", "use": "EXAM", "text": "Person full name", "expression": "https://www.datadictionary.nhs.uk/data_elements/person_full_name.html?hl=person%2Cname", "popUpText": "A reference to the funding source and any conditions or limitations associated. This can also record any further information for the person's care funding source e.g. self funded
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Care funding source", "type": "group", "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Care and support plan/Care funding source@2-build.2.1", "informationType": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Organisation Name@1-build.0.1" } ], "relationshipType": "specialisation", "isComponent": false, "valueSets": [ { "prefix": "NHS_DD", "use": "EXAM", "text": "Organisation code", "expression": "https://www.datadictionary.nhs.uk/attributes/organisation_code.html?hl=organisation%2Cdata%2Cservice", "popUpText": "This is a record of the date that this care and support plan was last updated.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Date this plan was last updated", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-PRSB-Datatypes/Date and Time@1-build.0.1" } ], "valueSets": [], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Care and support plan/Date this plan was last updated@2-build.2.1", "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "description": "Reference other care planning documents, including the type, location and date.
This may include condition-specific plans, advance care plans, end of life care plan, etc.
", "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Other care planning documents", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "valueSets": [], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Care and support plan/Other care planning documents@2-build.2.1", "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "description": "This is the date/interval when this information will next be reviewed. SNOMED CT tag : - 425268008 | Review of care plan (procedure) |
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Planned review date/interval", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-PRSB-Datatypes/Date and Time@1-build.0.1" } ], "valueSets": [], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Care and support plan/Planned review date/interval@2-build.2.1", "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "items": [ { "description": "The name of the professional with responsibility for the care of the person.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Name", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Person Name@1-build.0.1" } ], "valueSets": [], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Care and support plan/Responsibility for review/Name@2-build.2.1", "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "description": "The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker, key worker, care home manager, care coordinator, LA hospital liaison person, care home contact, hospital clinician, Independent Mental Capacity Advocate (IMCA) etc", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Role", "type": "item", "valueSets": [ { "prefix": "FHIR", "use": "EXAM", "text": "SDSjobrole", "expression": "https://simplifier.net/ukcore/codesystem-ukcore-sdsjobrolename", "popUpText": "" } ], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Care and support plan/Responsibility for review/Role@2-build.2.1" }, { "description": "Contact details of the professional (e.g. telephone number, email address etc.).
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Contact details", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/String@1-build.0.1" } ], "valueSets": [], "derivedFrom": "PRSB-Standards/WRIST-core-information-standard/Care and support plan/Responsibility for review/Contact details@2-build.2.1", "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" } ], "description": "This is a record of who has responsibility for arranging review of this information.This records the decisions reached during conversation between the individual and health and care professional about future plans and also records progress.
", "implementationGuidance": "", "informationType": "", "isComponent": true, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Care and support plan", "relationshipType": "neither", "type": "group", "valueSets": [] } ], "type": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-ips-datatypes/ips-datatypes/Coded Element@1-build.0.2" } ], "relationshipType": "specialisation" } ], "type": "", "valueDomain": [ { "type": "" } ], "relationshipType": "specialisation" }, { "items": [ { "items": [ { "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry/Date@None", "description": "The date the assessment was done.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Date", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-PRSB-Datatypes/Date and Time@1-build.0.1" } ], "valueSets": [ { "prefix": "PPPP", "use": "EXAM", "text": "", "expression": "", "popUpText": "The type of the assessment. For example, to assess epilepsy specific health-related quality of life, sleep, and psychological outcomes, the patient-reported outcome measures (PROM) can be applied. This is a 4-item subjective assessment of cognitive function in the past 7 days and is varied for the impact of epilepsy on education/ work and daily life activities, global epilepsy-specific health0related quality of life, depression symptoms, anxiety symptoms, suicidality, sleep adequacy and quality.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessment type", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "valueSets": [], "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry/Assessment summary@None", "description": "The summary of the assessment
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessment summary", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "valueSets": [], "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "items": [ { "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Structured assessment name@None", "description": "Structured assessment name e.g. GAD-7, PH-9, Quality of life etc.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Structured assessment name", "type": "item", "valueSets": [ { "prefix": "SNOMED_CT", "use": "EXAM", "text": "<273249006 |Assessment scales (assessment scale)|", "expression": "", "popUpText": "Examples include
1365853008\t\tGeneralized Anxiety Disorder 2 item scale
450739009\t\t\tStrengths and difficulties questionnaire
758711000000105\t\tPHQ-9 - Patient health questionnaire 9
" } ], "informationType": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-ips-datatypes/ips-datatypes/Coded Element@1-build.0.2" } ], "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "The structured assessment score.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessment score", "type": "item", "valueSets": [], "informationType": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Assessment value@None", "description": "The structured assessment value.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Assessment value", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/String@1-build.0.1" } ], "valueSets": [], "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Subscale score@None", "description": "The subscale score of the structured assessment.
", "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Subscale score", "type": "item", "valueSets": [], "informationType": "", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" }, { "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment/Subscale value@None", "description": "The subscale value of the structured assessment.
", "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Subscale value", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/String@1-build.0.1" } ], "valueSets": [], "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" } ], "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry/Structured assessment@None", "description": "Details of the structured assessment.", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Structured assessment", "type": "group" }, { "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry/Comment@None", "description": "Supporting text may be given regarding the assessment.
", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Comment", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Text@1-build.0.1" } ], "valueSets": [], "informationType": "", "relationshipType": "specialisation", "isComponent": false, "implementationGuidance": "" } ], "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments/Assessments record entry@None", "description": "This is the assessments record entry. There may be 0 to many record entry/entries under a section. Each record entry is made up of a number of elements or data items.", "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "Assessments record entry", "type": "group" } ], "derivedFrom": "PRSB-Standards/WRIST-Epilepsy-information-standard/Assessments@None", "description": "Details of the person's ongoing assessments of clinical outcome.
", "implementationGuidance": "This is a shared decision point record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.
", "implementationGuidance": "This is section is specifically important for the recording of discussions and agreements with patients for important treatment decisions.
These would include
Prescription of sodium valproate
Epilepsy surgery
The current status of the decision (in progress, valid, cancelled).
", "implementationGuidance": "A record of the actions taken to prepare the patient to make a shared decision before the discussion where a shared decision was made. This should include a summary of any resources the person was offered to prepare them for the decision making process.
", "implementationGuidance": "This section records all those who were involved in the shared decision, either with the person or on behalf of the person.
This may be where the person is a child, does not have mental capacity or the decision is made in the person's best interest as a shared decision.
People involved in the\n decision may include family members, parents, legal guardians, carers, Legal Power of Attorney, Independent Mental Capacity Advocate.
", "implementationGuidance": "", "items": [ { "derivedFrom": "PRSB-Standards/WRIST-shared-decision-making/shared-decision-making/Shared decision point/Discussion actions/Decision dialogue (deliberation)/People involved in making the decision/Name@1.0.0", "description": "The name of the person involved.
", "implementationGuidance": "The relationship the person involved has to the person (subject of record), e.g. parent, foster parent, grandmother, family friend etc.
", "implementationGuidance": "", "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Relationship", "type": "item", "valueSets": [ { "prefix": "FHIR", "use": "EXAM", "text": "Person Relationship type", "expression": "https://simplifier.net/hl7fhirukcorer4/valueset-ukcore-personrelationshiptype", "popUpText": "" } ], "derivedFrom": "PRSB-Standards/WRIST-shared-decision-making/shared-decision-making/Shared decision point/Discussion actions/Decision dialogue (deliberation)/People involved in making the decision/Relationship@1.0.0" }, { "derivedFrom": "PRSB-Standards/WRIST-shared-decision-making/shared-decision-making/Shared decision point/Discussion actions/Decision dialogue (deliberation)/People involved in making the decision/Relationship type@1.0.0", "description": "Additional roles the person performs on behalf of the other (e.g. Carer, Legal Guardian, Next of Kin, Emergency Contact, Dependent, etc.)
", "implementationGuidance": "The role of the person involved (if professional).
", "implementationGuidance": "Alignment to the workforce dataset NHS Occupation codes primarily is advised. Where no code is available, free text may be used. National Workforce Data Set (NWD) NHS Occupation codes are found here: - https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/national-workforce-data-set-nwd-and-nhs-occupation-codes. To access the list of roles, download the 'NWD dataset specification' using the link on the page. The Staff Groups and Job Roles are listed in the ‘NWD Class & Codes Appendix’ tab of the attached NWD Dataset from row 640. The 'Staff Group' and 'Job Role' segments are contained in one field named 'Job' which work together e.g. Staff Group = Nursing & Midwifery Registered and Job Role = Staff Nurse.
" } ] } ], "maximumMultiplicity": "*", "minimumMultiplicity": "0", "mro": "R", "name": "People involved in making the decision", "type": "group", "derivedFrom": "PRSB-Standards/WRIST-shared-decision-making/shared-decision-making/Shared decision point/Discussion actions/Decision dialogue (deliberation)/People involved in making the decision@1.0.0" }, { "description": "A record of the shared agenda setting process undertaken to support the shared decision. This may include:A record of what the patient said was their agenda (talk topic(s)) for the appointment.
", "implementationGuidance": "A record of the clinician's stated agenda (talk topic(s)) for the appointment.
", "implementationGuidance": "A record to establish what matters to the person in the context of the decision to be made, which may include as appropriate:
Record of the option discussed including the option to 'do nothing' if relevant.
", "implementationGuidance": "Any alphanumeric identifier associated with the decision support tool (if applicable).
", "implementationGuidance": "The name of the decision support tool.
", "implementationGuidance": "The type of the decision support tool.
", "implementationGuidance": "The URL for the decision support tool.
", "implementationGuidance": "MIME type of the document e.g. application, pdf, website.
", "implementationGuidance": "This is the date/interval when this information will next be reviewed.
", "implementationGuidance": "Details of any patient held issues, reservations or comments with the decision agreed, or any professional comments about the decision agreed.
", "implementationGuidance": "A record of the information withheld from the person.
", "implementationGuidance": "An indicator of whether information was withheld from the person. Yes or No.
", "implementationGuidance": "A description of the reason the information has been withheld from the person.
", "implementationGuidance": "Relevant details of any legal advice sought where information has been withheld from the person.
", "implementationGuidance": "Details of the information that still needs to be shared.
", "implementationGuidance": "An account of the professional's reason(s) for not sharing the information with the person during the encounter
", "implementationGuidance": "A explanation of what needs to happens so that the information can be shared.
", "implementationGuidance": "A record of the actions agreed to support the shared decision after the discussion. This should include:
Agreed actions for the professional such as those related to further information to be shared, planned investigations, procedures and treatment for a person's identified conditions and priorities.
Actions for the person or their carer. For example, following clinician shared printouts summarising the options or decisions made and there may be action for patient to review . Following clinician signposting to relevant online or physical information resources there may be an agreed action for the person to access and review the materials.
", "implementationGuidance": "Agreed actions for the professional including planned investigations, procedures and treatment for a person's identified conditions and priorities.
", "implementationGuidance": "Agreed actions for the person or their carer. For each action the following should be identified: outcome expectations, including person’s expectations.
", "implementationGuidance": "A record of documents used to record consent for an intervention.
", "implementationGuidance": "The therapeutic or diagnostic procedure performed, planned or not done. Includes both psychological and medical therapies and procedures. Complementary or alternative procedures should be recorded here.
", "implementationGuidance": "A code specifying the state of the procedure. Generally, this will be the in-progress or completed state.
", "implementationGuidance": "Example codes: preparation in-progress not-done: on-hold stopped completed entered-in-error unknown
", "informationType": "", "isComponent": false, "maximumMultiplicity": "1", "minimumMultiplicity": "0", "mro": "R", "name": "Status", "relationshipType": "specialisation", "type": "item", "valueDomain": [ { "type": "PRSB-Standards/WRIST-IPS-Datatypes/Coded Element@1-build.0.1" } ], "valueSets": [ { "prefix": "FHIR", "use": "EXAM", "text": "https://simplifier.net/packages/hl7.fhir.r4.core/4.0.1/files/2832472", "expression": "https://simplifier.net/packages/hl7.fhir.r4.core/4.0.1/files/2832472", "popUpText": "" } ] }, { "items": [], "derivedFrom": "PRSB-Standards/WRIST-Procedures-and-therapies/Procedures and therapies/Procedure record entry/Part of (parent procedure)@1-build.0.1", "description": "Details of the parent procedure that this procedure is part of.
", "implementationGuidance": "The indication for the procedure.
", "implementationGuidance": "Not performed reason for the procedure.
", "implementationGuidance": "The body site of the procedure.
", "implementationGuidance": "The laterality of the procedure.
", "implementationGuidance": "The outcome of the procedure.
", "implementationGuidance": "Details of any intra-operative complications encountered during the procedure, arising during the person’s stay in the recovery unit or directly attributable to the procedure.
", "implementationGuidance": "Details of any adverse reaction to any anesthetic agents including local anesthesia. Problematic intubation, transfusion reaction, etc.
", "implementationGuidance": "Any further textual comment to clarify such as statement that information is partial or incomplete. Also indicate the outcome of the procedure.
", "implementationGuidance": "The details of any procedures performed, planned or not done. Includes both psychological and medical therapies and procedures (e.g. cognitive behaviour therapy, hip replacement).
", "implementationGuidance": "The social setting in which the person lives, such as their household, occupational history, and lifestyle factors.
", "implementationGuidance": "The services and care provided for the person.
", "implementationGuidance": "The primary support reason for social care.
", "implementationGuidance": "Family history
", "implementationGuidance": "Investigation results
", "implementationGuidance": "Details of any investigations requested
", "implementationGuidance": "Examination findings
", "implementationGuidance": "Pregnancy status of the person.
", "implementationGuidance": "Details of the person's assessments
", "implementationGuidance": "Details of any risks related to the person.
", "implementationGuidance": "Allergies and adverse reactions
", "implementationGuidance": "Medications and medical devices
", "implementationGuidance": "Details of equipment/asset (or modifications) that the Local Authority has provided to the patient.
", "implementationGuidance": "The details of planned investigations, procedures and treatment, and whether this plan has been agreed with the person or their legitimate representative.
", "implementationGuidance": "| \n \n \n Any supplementary or personalised information that relates to the person's needs, concerns and problems. \n | \n
| \n \n \n \n \n \n | \n
| \n \n \n The overall goals, hopes, aims or targets that the person has. Including anything that the person wants to achieve that relates to their future health and wellbeing. Each goal may include a description of why it is important to the person. Goals may also be ranked in order of importance or priority to the person. \n | \n
This records the decisions reached during conversation between the individual and health and care professional about future plans and also records progress.
", "implementationGuidance": "Additional support plans
", "implementationGuidance": "Information relating to end of life care.
N.B. This is not an end of life care plan but contains information that would be found in an end of life care plan.
", "implementationGuidance": "Details about documents related to the person.
", "implementationGuidance": "