FHIR IG analytics| Package | hl7.fhir.us.uscdi-scd |
| Resource Type | StructureDefinition |
| Id | StructureDefinition-scd-hydroxyurea-adherence.json |
| FHIR Version | R4 |
| Source | https://build.fhir.org/ig/hlnconsulting/uscdi-scd-ig/StructureDefinition-scd-hydroxyurea-adherence.html |
| URL | http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/scd-hydroxyurea-adherence |
| Version | 0.1.0 |
| Status | active |
| Date | 2026-09-11T00:10:30+00:00 |
| Name | SCDHydroxyureaAdherenceExtension |
| Title | SCD Hydroxyurea Adherence |
| Realm | us |
| Authority | hl7 |
| Description | Captures the documented adherence level of a patient to hydroxyurea therapy. Hydroxyurea is the cornerstone disease-modifying therapy for SCD, but its effectiveness depends critically on consistent adherence. Non-adherence is associated with higher rates of VOC, ACS, and mortality. Adherence may be assessed by: - Patient/caregiver self-report - Pharmacy refill records (Medication Possession Ratio / PDC) - Laboratory biomarker (MCV elevation, HbF% increase as markers of response) - Pill count This extension is intended for use on MedicationStatement or as a component of an Observation (adherence monitoring encounter finding). TODO: Align adherence coding with established adherence measurement frameworks (e.g., MMAS, ARMS, WHO adherence classification) and reference appropriate LOINC codes if available. |
| Type | Extension |
| Kind | complex-type |
No resources found
No resources found
No extension usage examples found
Note: links and images are rebased to the (stated) source
Generated Narrative: StructureDefinition scd-hydroxyurea-adherence
| Name | Flags | Card. | Type | Description & Constraints |
|---|---|---|---|---|
  Extension | 0..* | Extension | Extension | |
  Slices for extension | Content/Rules for all slices | |||
   extension:adherenceLevel | S | 0..1 | Extension | Adherence level (high / moderate / low / non-adherent) |
   extension | 0..0 | Extension | ||
| url | 1..1 | uri | "adherenceLevel" | |
  value[x] | 0..1 | CodeableConcept | Value of extension | |
| extension:adherenceMethod | S | 0..1 | Extension | Method used to assess adherence |
| extension | 0..0 | Extension | ||
| url | 1..1 | uri | "adherenceMethod" | |
| value[x] | 0..1 | CodeableConcept | Value of extension | |
 extension:assessmentDate | S | 0..1 | Extension | Date adherence was assessed |
 extension | 0..0 | Extension | ||
| url | 1..1 | uri | "assessmentDate" | |
 value[x] | 0..1 | date | Value of extension | |
| url | 1..1 | uri | "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/scd-hydroxyurea-adherence" | |
 value[x] | 0..0 | Value of extension | ||
| Documentation for this format | ||||
FHIR
FHIRsmith{
"resourceType": "StructureDefinition",
"id": "scd-hydroxyurea-adherence",
"text": {
"status": "extensions",
"div": "<!-- snip (see above) -->"
},
"url": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/scd-hydroxyurea-adherence",
"version": "0.1.0",
"name": "SCDHydroxyureaAdherenceExtension",
"title": "SCD Hydroxyurea Adherence",
"status": "active",
"experimental": false,
"date": "2026-09-11T00:10:30+00:00",
"publisher": "HL7 International / Public Health",
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{
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{
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{
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]
}
],
"description": "Captures the documented adherence level of a patient to hydroxyurea therapy.\nHydroxyurea is the cornerstone disease-modifying therapy for SCD, but its\neffectiveness depends critically on consistent adherence. Non-adherence is\nassociated with higher rates of VOC, ACS, and mortality.\n\nAdherence may be assessed by:\n- Patient/caregiver self-report\n- Pharmacy refill records (Medication Possession Ratio / PDC)\n- Laboratory biomarker (MCV elevation, HbF% increase as markers of response)\n- Pill count\n\nThis extension is intended for use on MedicationStatement or as a component\nof an Observation (adherence monitoring encounter finding).\n\nTODO: Align adherence coding with established adherence measurement frameworks\n(e.g., MMAS, ARMS, WHO adherence classification) and reference appropriate\nLOINC codes if available.",
"jurisdiction": [
{
"coding": [
{
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"code": "US",
"display": "United States of America"
}
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},
{
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{
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{
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{
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{
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"human": "All FHIR elements must have a @value or children",
"expression": "hasValue() or (children().count() > id.count())",
"xpath": "@value|f:*|h:div",
"source": "http://hl7.org/fhir/StructureDefinition/Element"
}
],
"isModifier": false,
"isSummary": false,
"mapping": [
{
"identity": "rim",
"map": "N/A"
}
]
},
{
"id": "Extension.url",
"path": "Extension.url",
"representation": [
"xmlAttr"
],
"short": "identifies the meaning of the extension",
"definition": "Source of the definition for the extension code - a logical name or a URL.",
"comment": "The definition may point directly to a computable or human-readable definition of the extensibility codes, or it may be a logical URI as declared in some other specification. The definition SHALL be a URI for the Structure Definition defining the extension.",
"min": 1,
"max": "1",
"base": {
"path": "Extension.url",
"min": 1,
"max": "1"
},
"type": [
{
"extension": [
{
"url": "http://hl7.org/fhir/StructureDefinition/structuredefinition-fhir-type",
"valueUrl": "uri"
}
],
"code": "http://hl7.org/fhirpath/System.String"
}
],
"fixedUri": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/scd-hydroxyurea-adherence",
"isModifier": false,
"isSummary": false,
"mapping": [
{
"identity": "rim",
"map": "N/A"
}
]
},
{
"id": "Extension.value[x]",
"path": "Extension.value[x]",
"short": "Value of extension",
"definition": "Value of extension - must be one of a constrained set of the data types (see [Extensibility](http://hl7.org/fhir/R4/extensibility.html) for a list).",
"min": 0,
"max": "0",
"base": {
"path": "Extension.value[x]",
"min": 0,
"max": "1"
},
"type": [
{
"code": "base64Binary"
},
{
"code": "boolean"
},
{
"code": "canonical"
},
{
"code": "code"
},
{
"code": "date"
},
{
"code": "dateTime"
},
{
"code": "decimal"
},
{
"code": "id"
},
{
"code": "instant"
},
{
"code": "integer"
},
{
"code": "markdown"
},
{
"code": "oid"
},
{
"code": "positiveInt"
},
{
"code": "string"
},
{
"code": "time"
},
{
"code": "unsignedInt"
},
{
"code": "uri"
},
{
"code": "url"
},
{
"code": "uuid"
},
{
"code": "Address"
},
{
"code": "Age"
},
{
"code": "Annotation"
},
{
"code": "Attachment"
},
{
"code": "CodeableConcept"
},
{
"code": "Coding"
},
{
"code": "ContactPoint"
},
{
"code": "Count"
},
{
"code": "Distance"
},
{
"code": "Duration"
},
{
"code": "HumanName"
},
{
"code": "Identifier"
},
{
"code": "Money"
},
{
"code": "Period"
},
{
"code": "Quantity"
},
{
"code": "Range"
},
{
"code": "Ratio"
},
{
"code": "Reference"
},
{
"code": "SampledData"
},
{
"code": "Signature"
},
{
"code": "Timing"
},
{
"code": "ContactDetail"
},
{
"code": "Contributor"
},
{
"code": "DataRequirement"
},
{
"code": "Expression"
},
{
"code": "ParameterDefinition"
},
{
"code": "RelatedArtifact"
},
{
"code": "TriggerDefinition"
},
{
"code": "UsageContext"
},
{
"code": "Dosage"
},
{
"code": "Meta"
}
],
"constraint": [
{
"key": "ele-1",
"severity": "error",
"human": "All FHIR elements must have a @value or children",
"expression": "hasValue() or (children().count() > id.count())",
"xpath": "@value|f:*|h:div",
"source": "http://hl7.org/fhir/StructureDefinition/Element"
}
],
"isModifier": false,
"isSummary": false,
"mapping": [
{
"identity": "rim",
"map": "N/A"
}
]
}
]
},
"differential": {
"element": [
{
"id": "Extension",
"path": "Extension"
},
{
"id": "Extension.extension:adherenceLevel",
"path": "Extension.extension",
"sliceName": "adherenceLevel",
"short": "Adherence level (high / moderate / low / non-adherent)",
"min": 0,
"max": "1",
"mustSupport": true
},
{
"id": "Extension.extension:adherenceLevel.extension",
"path": "Extension.extension.extension",
"max": "0"
},
{
"id": "Extension.extension:adherenceLevel.url",
"path": "Extension.extension.url",
"fixedUri": "adherenceLevel"
},
{
"id": "Extension.extension:adherenceLevel.value[x]",
"path": "Extension.extension.value[x]",
"type": [
{
"code": "CodeableConcept"
}
]
},
{
"id": "Extension.extension:adherenceMethod",
"path": "Extension.extension",
"sliceName": "adherenceMethod",
"short": "Method used to assess adherence",
"min": 0,
"max": "1",
"mustSupport": true
},
{
"id": "Extension.extension:adherenceMethod.extension",
"path": "Extension.extension.extension",
"max": "0"
},
{
"id": "Extension.extension:adherenceMethod.url",
"path": "Extension.extension.url",
"fixedUri": "adherenceMethod"
},
{
"id": "Extension.extension:adherenceMethod.value[x]",
"path": "Extension.extension.value[x]",
"type": [
{
"code": "CodeableConcept"
}
]
},
{
"id": "Extension.extension:assessmentDate",
"path": "Extension.extension",
"sliceName": "assessmentDate",
"short": "Date adherence was assessed",
"min": 0,
"max": "1",
"mustSupport": true
},
{
"id": "Extension.extension:assessmentDate.extension",
"path": "Extension.extension.extension",
"max": "0"
},
{
"id": "Extension.extension:assessmentDate.url",
"path": "Extension.extension.url",
"fixedUri": "assessmentDate"
},
{
"id": "Extension.extension:assessmentDate.value[x]",
"path": "Extension.extension.value[x]",
"type": [
{
"code": "date"
}
]
},
{
"id": "Extension.url",
"path": "Extension.url",
"fixedUri": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/scd-hydroxyurea-adherence"
},
{
"id": "Extension.value[x]",
"path": "Extension.value[x]",
"max": "0"
}
]
}
}