ARCHETYPE Family history screening questionnaire (openEHR-EHR-OBSERVATION.family_history_screening_questionnaire.v0)

Name: Family history screening questionnaire
License: http://creativecommons.org/licenses/by-sa/4.0/

ARCHETYPE ID	openEHR-EHR-OBSERVATION.family_history_screening_questionnaire.v0
Concept	Family history screening questionnaire
Description	Series of questions and associated answers used to screen for health-related problems found in genetic and non-genetic family members.
Use	Use to create a framework for recording answers to pre-defined screening questions about health-related problems found in both genetic and non-genetic family members. Traditionally the scope of family history has been focused on identifying factors or biomarkers in genetically related family members. Non-genetic family members may also be included, such as adopted or long term fostered children, those related by marriage, or other unrelated individuals who participate in the regular life and influence of the family. The intended scope of this archetype is to include the broadest range of problems or issues that might be found within families. It includes problems or diagnoses that are: - genetically inheritable, such as breast cancer or Huntington’s disease - not genetically inheritable but influenced by psychological, social, or environmental factors related to the family, such as exposure to toxins in the family home, domestic violence, sexual abuse, alcoholism and other addictions. This archetype has two discrete approaches for screening for family history: - All relationships - Does anyone in the family have ‘Problem/diagnosis name’? - Specified relationship - Does your 'Relationship' have ‘Problem/diagnosis name’? Common use cases include, but are not limited to: - Systematic questioning in any consultation, for example: --- Is there a history of heart disease in the family? --- Is there a history of mental health problems in the family? --- Is there a history of addiction in the family? --- Did your mother have diabetes? - Specific questioning related to chronic disease management or preventive health. Templates for specific use cases may be constrained to relationships with genetic family members if required. The semantics of this archetype are intentionally loose, and querying this archetype would normally only be useful or safe within the context of each specific template. In a template, each data element would usually be renamed to the specific question asked. Where value sets have been proposed for common use cases, these can be adapted for local use by using the DV_TEXT or the DV_BOOLEAN datatypes choice to match each specific use case. Use separate EVENTs to specify whether the questions relate to a point in time or an interval of time. For example: "Do any family members have COVID now?" as a point in time EVENT and "Have any family members had COVID during the past 4 weeks?" as an interval EVENT. The source of the information in a questionnaire response may vary in different contexts but can be specifically identified using the 'Information provider' element in the Reference Model. This archetype has been designed to be used as a screening tool or to record simple questionnaire-format data for use in situations such as a disease registry. If the screening questionnaire identifies the presence of a health concern in a family member, it is recommended that the clinical system record the specific details using the EVALUATION.family_history archetype or the CLUSTER.family_prevalence archetype.
Misuse	Not to be used to record details about the presence or absence of a family-related problem outside of a screening context. Use EVALUATION.family_history or EVALUATION.exclusion_specific for these purposes. Not to be used to record a Family Pedigree chart of health problems/diagnoses. Use the EVALUATION.family_history archetype for this purpose.
Purpose	To create a framework for recording answers to pre-defined screening questions about health-related problems found in both genetic and non-genetic family members.
References
Copyright	© openEHR Foundation
Authors	Author name: Marit Alice Venheim Organisation: Helse Vest IKT AS Email: marit.alice.venheim@helse-vest-ikt-no Date originally authored: 2020-08-20
Other Details Language	Author name: Marit Alice Venheim Organisation: Helse Vest IKT AS Email: marit.alice.venheim@helse-vest-ikt-no Date originally authored: 2020-08-20
OtherDetails Language Independent	{licence=This work is licensed under the Creative Commons Attribution-ShareAlike 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by-sa/4.0/., custodian_organisation=openEHR Foundation, original_namespace=org.openehr, original_publisher=openEHR Foundation, custodian_namespace=org.openehr, MD5-CAM-1.0.1=07D97F5B933641FDAAEA988F1809DAFA, build_uid=eff5bafd-7a8f-4eee-b670-abe951f93bd4, ip_acknowledgements=This artefact includes content from SNOMED Clinical Terms® (SNOMED CT®) which is copyrighted material of the International Health Terminology Standards Development Organisation (IHTSDO). Where an implementation of this artefact makes use of SNOMED CT content, the implementer must have the appropriate SNOMED CT Affiliate license - for more information contact https://www.snomed.org/snomed-ct/get-snomed or info@snomed.org., revision=0.0.1-alpha}
Keywords	family, history, health, condition, problem, diagnosis, family history, relative, biological, relationship, background, genetic
Lifecycle	in_development
UID	6abb0932-9f6d-492b-bca8-419f7f7dddd4
Language used	en
Citeable Identifier	1013.1.5152
Revision Number	0.0.1-alpha
All	Archetype [runtimeNameConstraintForConceptName=null, archetypeConceptBinding=null, archetypeConceptDescription=Series of questions and associated answers used to screen for health-related problems found in genetic and non-genetic family members., archetypeConceptComment=The answers may be self-reported., otherContributors=Vebjørn Arntzen, Oslo University Hospital, Norway (openEHR Editor) Silje Ljosland Bakke, Helse Vest IKT AS, Norway (openEHR Editor) SB Bhattacharyya, Bhattacharyyas Clinical Records Research & Informatics LLP, India Hugo Claudio Briceño García, Catsalut, Spain Clara Calleja Vega, CatSalut. Servei Català de la Salut., Spain Christian Chevalley, ADOC, Thailand Giovanni Delussu, crs4, Italy Mona Didriksen, Helse Vest IKT, Norway (Nasjonal IKT redaktør) Manuela Domingo, hospital general universitario dr. balmis, Spain Gunn Elin Blakkisrud, DIPS ASA, Norway Aleksander Furnes, Helse Nord IKT, Norway Ciprian Gerstenberger, HN IKT, Norway (openEHR Norway redaktør) Rosane Gotardo, Systema Ltda., Brazil Heather Grain, Llewelyn Grain Informatics, Australia Atle Hansen, Universitetssykehuset Nord-Norge, Norway Evelyn Hovenga, EJSH Consulting, Australia Susanna Jönsson, Region Värmland, Sweden Mika Kiviaho, Tietoevry Care, Finland June Marie Nepstad Knappskog, Helse Nord IKT AS, Norway (openEHR Editor), Norway Martin Koch, Servei Català de la Salut, Spain Ronald Krawec, Alberta Health Services, Canada Lise Kristin Knutsen, Oslo universitetssykehus, Norway Anjali Kulkarni, Karkinos, India Kanika Kuwelker, Helse Vest IKT, Norway (Nasjonal IKT redaktør) Jörgen Kuylenstierna, eWeave AB, Sweden Eli Larsen, UNN, Norway Liv Laugen, Oslo University Hospital, Norway, Norway (openEHR Editor) Darin Leonhardt, PLRI für medizinische Informatik/ Medizinische Hochschule, Germany Heather Leslie, Atomica Informatics, Australia (openEHR Editor) Ruth Lochan, Akademiska Sjukhuset Uppsala, Sweden Michael Lutz, BITsoft, Germany Hanne Marte Bårholm, Helse Vest IKT, Norway (openEHR Norway redaktør) Ian McNicoll, freshEHR Clinical Informatics, United Kingdom Arunakiry Natarajan, medondo, Germany Svenne Naumann, Finnmarkssykehuset, Norway Olha Nikolaieva, University Hospital Basel, Switzerland Terje Nordberg, Helse Bergen, Norway Mikael Nyström, Cambio Healthcare Systems AB, Sweden Marlene Pérez Colman, Digital Health and Care Wales, United Kingdom Terje Sagmyr, Helse Vest IKT, Norway (Nasjonal IKT redaktør) Benjamin Senst, Germany Andre Smitt-Ingebretsen, Sørlandet sykehus HF, Norway Norwegian Review Summary, Norwegian Public Hospitals, Norway John Tore Valand, Helse Vest IKT, Norway (openEHR Editor) Marit Alice Venheim, Helse Vest IKT, Norway (openEHR Editor) Wouter Zanen, Eurotranplant, Netherlands, originalLanguage=en, translators= German: Henning Schmidt, Darin Leonhardt, Martin Koch, Medizinische Hochschule Hannover, PLRI für medizinische Informatik/ Medizinische Hochschule, Servei Català de la Salut, hschmidt@n-z-a.de, leonhardt.darin@mh-hannover.de, martinandreaskoch@catsalut.cat Norwegian Bokmål: Silje Ljosland Bakke, Marit Alice Venheim, John Tore Valand, Liv Laugen, Vebjørn Arntzen, Hanne Marte Bårholm, Helse Vest IKT AS, Helse Bergen, Oslo University Hospital, Norway, silje.ljosland.bakke@helse-vest-ikt.no, marit.alice.venheim@helse-vest-ikt.no, john.tore.valand@helse-bergen.no, john.tore.valand@helse-vest-ikt.no, liv.laugen@ous-hf.no, varntzen@ous-hf.no, hanne.marte.sandal.barholm@helse-vest-ikt.no , subjectOfData=unconstrained, archetypeTranslationTree=null, topLevelToAshis={items=[], contacts=[], state=[], capabilities=[], relationships=[], context=[], description=[], ism_transition=[], identities=[], target=[], credentials=[], other_participations=[], data=[ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0004], code=at0004, itemType=ELEMENT, level=4, text=Screening purpose, description=The context or reason for screening., comment=This data element is intended to provide collection context for the question/answer groups when queried at a later date. It is not expected that this data element will be exposed to the individual, but only stored in data. For example: pre-admission screening or the name of the actual questionnaire., uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=DV_TEXT, bindings=null, values=, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0038], code=at0038, itemType=ELEMENT, level=4, text=Description, description=Narrative description about the history of any problem or diagnosis in the family., comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=DV_TEXT, bindings=null, values=, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0042], code=at0042, itemType=CLUSTER, level=4, text=Any family member, description=Presence of a specific problem or diagnosis in any family member., comment='Problem/Diagnosis name' has been made mandatory as it is the sole focus of the question with no further details anticipated. For example: “Does anyone in the family have diabetes?”., uncommonOntologyItems=null, occurencesFormal=0.., occurencesText=Optional, repeating, cardinalityFormal=1.., cardinalityText= (Cardinality: 1.., unordered), subCardinalityFormal=null, subCardinalityText=null, dataType=CLUSTER, bindings=null, values=, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0042]/items[at0043], code=at0043, itemType=ELEMENT, level=5, text=Problem/diagnosis name, description=Identification of a specific problem or diagnosis, or a grouping of problems or diagnoses, in the family., comment=For example: 'Colorectal cancer' or 'Cancer'; 'Angina' or 'Cardiovascular disease'. Coding of the 'Problem/diagnosis name' with a terminology is preferred, where possible., uncommonOntologyItems=null, occurencesFormal=1..1, occurencesText=Mandatory, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=DV_TEXT, bindings=null, values=, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0042]/items[at0044], code=at0044, itemType=ELEMENT, level=5, text=Presence?, description=Is there a history of a problem or diagnosis, or grouping of problems or diagnoses in the family?, comment=In a template, the data element would usually be renamed to the specific question asked. The proposed value set can be adapted for local use by using the DV_TEXT or the DV_BOOLEAN datatypes choice to match each specific use case. In cases where an individual is adopted and no information is available, it is recommended to record 'Unknown'. For example: Does any in your family have diabetes?, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=CHOICE, bindings=null, values=Choice of:* Coded Text at0045::Yes [SNOMED-CT::373066001 \| Yes] at0046::No [SNOMED-CT::373067005 \| No] at0047::Unknown [SNOMED-CT::261665006 \| Unknown] at0048::Unsure Text Boolean , extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0042]/items[at0050], code=at0050, itemType=ELEMENT, level=5, text=Comment, description=Additional narrative about the specific problem or diagnosis in the family, not captured in other fields., comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=DV_TEXT, bindings=null, values=, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0009], code=at0009, itemType=CLUSTER, level=4, text=Specific relationship, description=Details about an identified problem or diagnosis in a specific relationship or relationship degree., comment=‘Relationship’ is the focus of the question, and in order to answer the question both the 'Relationship' and the 'Problem/diagnosis name' need to be mandatory. For example: 'Does your father have diabetes?' or 'Have any of your first degree relations had colorectal cancer?', uncommonOntologyItems=null, occurencesFormal=0.., occurencesText=Optional, repeating, cardinalityFormal=1.., cardinalityText= (Cardinality: 1.., unordered), subCardinalityFormal=null, subCardinalityText=null, dataType=CLUSTER, bindings=null, values=, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0009]/items[at0018], code=at0018, itemType=ELEMENT, level=5, text=Relationship, description=The relationship of the family member to the individual., comment=For example: First degree relative, mother, step-father, maternal grandmother, or paternal uncle. Coding of the relationship with a terminology is preferred, where possible and including specification of maternal and paternal as required., uncommonOntologyItems=null, occurencesFormal=1..1, occurencesText=Mandatory, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=DV_TEXT, bindings=null, values=, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0009]/items[at0035], code=at0035, itemType=ELEMENT, level=5, text=Problem/diagnosis name, description=Identification of a problem or diagnosis, or grouping of problems or diagnoses in the family., comment=Coding of the 'Problem/diagnosis name' with a terminology is preferred, where possible., uncommonOntologyItems=null, occurencesFormal=1..1, occurencesText=Mandatory, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=DV_TEXT, bindings=null, values=, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0009]/items[at0010], code=at0010, itemType=ELEMENT, level=5, text=Presence?, description=Is there a history of a problem or diagnosis in family members?, comment=In a template, the data element would usually be renamed to the specific question asked. The proposed value set can be adapted for local use by using the DV_TEXT or the DV_BOOLEAN datatypes choice to match each specific use case. In cases where an individual is adopted and no information is available, it is recommended to record 'Unknown'. 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For example: the actual date and/or time; the start and stop time for when the issue, problem or diagnosis occured; the interval of time during which the issue, problem or diagnosis occured; the duration of the issue, problem or diagnosis; the age of the individual at the time of the issue, problem or diagnosis; or the duration of time since it occurred. 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