ICHOM Patient Centered Outcomes Measure Set for Breast Cancer
1.0.0 - trial-use

ICHOM Patient Centered Outcomes Measure Set for Breast Cancer, published by HL7 International - Clinical Interoperability Council Group. This is not an authorized publication; it is the continuous build for version 1.0.0). This version is based on the current content of https://github.com/HL7/fhir-ichom-breast-cancer-ig/ and changes regularly. See the Directory of published versions

## ICHOM Set

Page standards status: Informative

This domain of knowledge IG focuses on representing the same variables in the measure set in two ways - 1) as FHIR Questionnaires for patient-reported and clinical-reported outcomes, and 2) as discrete FHIR resources for clinical-reported outcomes. Implementers are free to choose whether they want to implement the questionnaires, profiles, or both.

### Questionnaires

Questionnaires in this IG are organized differently than the ICHOM reference guide and data dictionary, and this is due to their different focuses or intended uses. The reference guide and data dictionary are meant to describe all of the data elements included in the set, so they are organized by data or variable type (e.g. Demographics, Baseline Clinical Factors). In contrast, this IG is meant to facilitate collection of the data elements. Therefore, it is organized by when in the patient’s care pathway the data is to be collected (e.g. Baseline, 1 year follow-up) and the source of the data (clinical or patient reported). Despite this difference in organization, the data elements with the FHIR IG and ICHOM’s reference guide and data dictionary are completely aligned.

### Profiles

Profiles follow the ICHOM reference guide and data dictionary organisation, as laid out in the table below. Each variable is mapped to a single FHIR resource, or several variables are mapped to the same FHIR resource. The mappings themselves are communicated using a FHIR profile.

The table below lays out the measure set variable to FHIR profile mappings. A backwards FHIR to ICHOM mapping is available within each profile’s `Mappings` tab.

Variable ID | ITEM | FHIR profile
--- | --- | ---
Demographic factors |  |
Sex | Sex | BreastCancerPatient
YearOfBirth | Year of Birth | BreastCancerPatient
COUNTRY | Country | BreastCancerPatient
Ethnicity | Ethnicity | BreastCancerPatient
Race | Race | BreastCancerPatient
EducationLevel | Level of education | BreastCancerPatient
RelationshipStatus | Relationship status | BreastCancerPatient
MENOPAUSE | Menopause status | MenopausalStatus
Baseline clinical factors |  |
HeightValue | Body height | BodyHeight
HeightUnit | Body height units | BodyHeight
WeightValue | Body weight | BodyWeight
WeightUnit | Body weight units | BodyWeight
LATERAL | Laterality | PrimaryBreastCancerCondition
FIRSTBC | First breast cancer | PrimaryBreastCancerCondition
SECONDBC | Second breast cancer | SecondaryBreastCancerCondition
Baseline tumor factors |  |
HistologicalDiagnosisDate | Date of histological diagnosis | Histotype
HISTOTYPE | Histological type | Histotype
MUTBC | Genetic mutation | GermlineMutation
GRADEINV | Invasion grade | InvasionGrade
GRADEDCIS | Tumor grade | TumorGrade
TNMCT_BREAST | Clinical tumor stage | TNMPrimaryTumorStage and TNMStageGroup
TNMCN_BREAST | Clinical nodal stage | TNMRegionalNodalStage and TNMStageGroup
TNMCM_BREAST | Clinical distant metastatsis | TNMDistantMetastases and TNMStageGroup
TNMPT_BREAST | Pathological tumor stage | TNMPrimaryTumorStage and TNMStageGroup
TNMPN_BREAST | Pathological nodal stage | TNMRegionalNodalStage and TNMStageGroup
TNMPM_BREAST | Pathological distant metastasis | TNMDistantMetastases and TNMStageGroup
SIZEINV | Size of invasive tumor | TumorSize
NumLymphNodesResect | Number lymph nodes resected | LymphNodesResected
LYMPHINV_BREAST | Lymph nodes involved | LymphNodesInvolved
ERSTATUS | Estrogen receptor status | ERStatus
PRSTATUS | Progesterone receptor status | PRStatus
HER2STATUS | HER2 receptor status | HERStatus
MolecularProfiling | Molecular profiling | See MammaprintScore, OncotypeScore, and EndopredictonScore
Mammaprint | Mammaprint score | MammaprintScore
Oncotype | Oncotype Score | OncotypeScore
Endopredict | Endopredict Score | EndopredictonScore
MultMeet | Multidisciplinary meeting | TreatmentPlan
MultRecTreatments | Multidisciplinary Recommended Treatments | TreatmentPlan
Treatment variables |  |
TREATMENT_BREAST | Treatment | All the procedures
SURGERY_BREAST | Surgery | BreastCancerSurgery
SurgeryDate | Surgery date | BreastCancerSurgery
SURGERYAX | Surgery axilla | AxillaSurgery
SURGERYAXDATE | Surgery axilla date | AxillaSurgery
SURGERYAX2 | Axillary clearance | AxillaryClearance
SURGERYAX2DATE | Axillary clearance date | AxillaryClearance
RECONSTRUCTION_DELAY | Reconstruction | ReconstructionSurgery
SURGERY_RECONSTRUCTION | Reconstruction type | ReconstructionSurgery
ImplantReconstruction | Implant reconstruction | ReconstructionSurgery
RECONSTRUCTDATE | Reconstruction date | ReconstructionSurgery
RADIOTX_BREAST | Radiotherapy | Radiotherapy
RADIOTXTYPE_BREAST | Radiotherapy type | Radiotherapy
RadioTxStartDate | Radiotherapy start date | Radiotherapy
RadioTxStopDate | Radiotherapy stop date | Radiotherapy
CHEMOTXINTENT | Chemotherapy | Chemotherapy
CHEMOTXTYPE_BREAST | Type of chemotherapy | Chemotherapy
ChemoTxStartDate | Chemotherapy start date | Chemotherapy
ChemoTxStopdate | Chemotherapy stop date | Chemotherapy
HORMONTX_BREAST | Hormonal therapy | Hormonaltherapy
HORMONTXTYPE | Hormonal therapy type | Hormonaltherapy
HORMONTXSTARTDATE | Start of hormonal therapy | Hormonaltherapy
HORMONTXSTOPDATE | Stop of hormonal therapy | Hormonaltherapy
TARGETTX_BREAST | Targeted therapy | TargetedTherapy
TargetTxStartDate | Targeted therapy start date | TargetedTherapy
TargetTxStopDate | Targeted therapy stop date | TargetedTherapy
SURGERYPATIENT | Surgery | ReoperationSurgery
SURGERYDATEPATIENT | Surgery date | ReoperationSurgery
TreatmentPlanFollowed | Real treatment plan followed | TreatmentPlanFollowed
TreatmentPlanNotFollowed | Treatment plan not followed | TreatmentPlanNotFollowed
Disutility of care |  |
REOP_BREAST | Involved margins reoperation | ReoperationSurgery
REOP_RECONSTRUCTION | Reconstruction reoperation | ReconstructionSurgery
REOPDATE_BREAST | Positive margins reoperation date | ReoperationSurgery
ComplicationImpact0 | Impact of complication | Complication
ComplicationAttrTreatment | Complication attributed to treatment | Complication
COMPL_BREAST | Complication type | Complication
Survival and Disease control |  |
MalignancyRecur | Recurrence | PrimaryBreastCancerCondition
RecurMethod | Recurrence method | RecurrenceMethod
RecurDateCancer | Date of cancer recurrence | PrimaryBreastCancerCondition
VitalStatus | Vital status | BreastCancerPatient
DeceasedDate | Date of death | BreastCancerPatient
DEATHBC | Death attributable to breast cancer | DeathAttributableBC

### Must Support

Must Support in this implementation guide is used to indicate that a particular element is mapped a measure set variable, and must be populated with data should it be available in the system.

In case an element cannot be populated because it is not available in the source system, if the cardinality rules allow it, the element can be left unfilled. In case the cardinality rules require an element to be populated, the Data Absent Reason extension SHALL be used.