ICHOM Patient Centered Outcomes Measure Set for Breast Cancer
1.0.0 - trial-use
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
| Official URL: http://hl7.org/fhir/uv/ichom-breast-cancer/Questionnaire/PatientReportedFollowUp | Version: 1.0.0 | |||
| Standards status: Informative | Computable Name: PatientReportedFollowUp | |||
Patient-reported response at every 6 months for first 2 years post-treatment, after 2 years tracked annually for up to 10 years
| LinkId | Text | Cardinality | Type | Description & Constraints |
|---|---|---|---|---|
  PatientReportedFollowUp | Patient-reported response at every 6 months for first 2 years post-treatment, after 2 years tracked annually for up to 10 years | Questionnaire | http://hl7.org/fhir/uv/ichom-breast-cancer/Questionnaire/PatientReportedFollowUp#1.0.0 | |
  General-Information-Clinical | General information | 1..1 | group | |
  NA-Clinical | What is the patient's medical record number? | 1..1 | string | |
 LastName-Clinical | What is the patient's last name? | 1..1 | string | |
| Degree-of-Health-EORTC-QLQ | Degree of Health - EORTC-QLQ | 0..1 | group | |
| EORTCQLQ-Question01-05 | We are interested in some things about you and your health. Please answer all of the questions yourself by selecting the answer that best applies to you. There are no 'right' or 'wrong' answers. The information that you provide will remain strictly confidential. | 0..1 | group | |
 EORTCQLQC30_Q01 | Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q02 | Do you have any trouble taking a long walk? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q03 | Do you have any trouble taking a short walk outside of the house? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q04 | Do you need to stay in bed or a chair during the day? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q05 | Do you need help with eating, dressing, washing yourself or using the toilet? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQ-Question06-28 | During the past week: | 0..1 | group | |
| EORTCQLQC30_Q06 | Were you limited in doing either your work or other daily activities? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q07 | Were you limited in pursuing your hobbies or other leisure time activities? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q08 | Were you short of breath? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q09 | Have you had pain? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q10 | Did you need to rest? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q11 | Have you had trouble sleeping? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q12 | Have you felt weak? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q13 | Have you lacked appetite? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q14 | Have you felt nauseated? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q15 | Have you vomited? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q16 | Have you been constipated? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q17 | Have you had diarrhea? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q18 | Were you tired? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q19 | Did pain interfere with your daily activities? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q20 | Have you had difficulty in concentrating on things, like reading a newspaper or watching television? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q21 | Did you feel tense? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q22 | Did you worry? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q23 | Did you feel irritable? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q24 | Did you feel depressed? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q25 | Have you had difficulty remembering things? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q26 | Has your physical condition or medical treatment interfered with your family life? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q27 | Has your physical condition or medical treatment interfered with your social activities? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQC30_Q28 | Has your physical condition or medical treatment caused you financial difficulties? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQ-Question29-30 | For the following questions please select the number between 1 and 7 that best applies to you, with 1 = Very poor and 7 = Excellent. | 0..1 | group | |
| EORTCQLQC30_Q29 | How would you rate your overall health during the past week? | 1..1 | choice | Options: 7 options |
| EORTCQLQC30_Q30 | How would you rate your overall quality of life during the past week? | 1..1 | choice | Options: 7 options |
| EORTCQLQ-Question31-43 | Patients sometimes report that they have the following symptoms or problems. Please indicate the extent to which you have experienced these symptoms or problems during the past week. Please answer by selecting the answer that best applies to you. During the past week: | 0..1 | group | |
| EORTCQLQBR45_Q31 | Have you had dry mouth? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q32 | Have food and drink tasted different than usual? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q33 | Have your eyes been painful, irritated or watery? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q34 | Have you lost any hair? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q35 | Have you been upset by the loss of your hair? | 0..1 | choice | Enable When: EORTCQLQBR45_Q34 != Not at all (Agreement response CodeSystem#no) Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q36 | Have you felt ill or unwell? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q37 | Have you had hot flushes? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q38 | Have you had headaches? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q39 | Have you felt physically less attractive as a result of your disease or treatment? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q40 | Have you felt less feminine as a result of your disease or treatment? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q41 | Have you had problems looking at yourself naked? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q42 | Have you been dissatisfied with your body? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q43 | Have you worried about your health in the future? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQ-Question44-46 | During the past four weeks: | 0..1 | group | |
| EORTCQLQBR45_Q44 | Have you been sexually active? (with or without intercourse) | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q45 | To what extent were you sexually active? (with or without intercourse) | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q46 | Has sex been enjoyable for you? | 0..1 | choice | Enable When: EORTCQLQBR45_Q45 != Not at all (Agreement response CodeSystem#no) Value Set: Agreement response ValueSet |
| EORTCQLQ-Question47-69 | During the past week: | 0..1 | group | |
| EORTCQLQBR45_Q48 | Have you had a swollen arm or hand? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q49 | Have you had problems raising your arm or moving it sideways? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q50 | Have you had any pain in the area of your affected breast? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q51 | Has the area of your affected breast been swollen? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q52 | Has the area of your affected breast been oversensitive? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q53 | Have you had skin problems on or in the area of your affected breast (e.g., itchy, dry, flaky)? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q54 | Have you sweated excessively? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q55 | Have you had mood swings? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q56 | Have you been dizzy? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q57 | Have you had soreness in your mouth? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q58 | Have you had any reddening in your mouth? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q59 | Have you had pain in your hands or feet? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q60 | Have you had any redenning on your hands or feet? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q61 | Have you had tingling in your fingers or toes? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q62 | Have you had numbness in your fingers or toes? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q63 | Have you had problems with your joints? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q64 | Have you had stiffness in your joints? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q65 | Have you had pain in your joints? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q66 | Have you had aches or pains in your bones? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q67 | Have you had aches or pains in your muscles? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q68 | Have you gained weight? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q69 | Has weight gain been a problem for you? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQ-Question70-71 | During the past four weeks: | 0..1 | group | |
| EORTCQLQBR45_Q70 | Have you had a dry vagina? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q71 | Have you had discomfort in your vagina? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQ-Question72-73 | Please answer the following two questions only if you have been sexually active: | 0..1 | group | |
| EORTCQLQBR45_Q72 | Have you had pain in your vagina during sexual activity? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q73 | Have you experienced a dry vagina during sexual activity? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQ-Question74-75 | During the past week: | 0..1 | group | |
 EORTCQLQBR45_Q74 | Have you been satisfied with the cosmetic result of the surgery? | 1..1 | choice | Value Set: Agreement response ValueSet |
| EORTCQLQBR45_Q75 | Have you been satisfied with the appearance of the skin of your affected breast (thoracic area)? | 1..1 | choice | Value Set: Agreement response ValueSet |
| Degree-of-Health-BreastQ | Degree of Health BreastQ | 0..1 | group | |
| BreastQ_Surgery | Which type of surgery did you receive? | 1..1 | choice | Value Set: Types of breast surgery ValueSet |
| MastectomyFollowUp | With your breast area in mind, in the past 2 weeks, how satisfied or dissatisfied have you been with: | 0..1 | group | Enable When: BreastQ_Surgery = Mastectomy without immediate reconstruction (Breast surgery types CodeSystem#mastectomy-without-immediate-reconstruction) |
| BREASTQMASTP_Q01 | How you look in the mirror clothed? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy without immediate reconstruction (Breast surgery types CodeSystem#mastectomy-without-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQMASTP_Q02 | How comfortably your bras fit? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy without immediate reconstruction (Breast surgery types CodeSystem#mastectomy-without-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQMASTP_Q03 | Being able to wear clothing that is more fitted? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy without immediate reconstruction (Breast surgery types CodeSystem#mastectomy-without-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQMASTP_Q04 | How you look in the mirror unclothed? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy without immediate reconstruction (Breast surgery types CodeSystem#mastectomy-without-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BreastConservingTherapyFollowUp | The following questions are about your breasts and your breast cancer treatment (by treatment, we mean lumpectomy with or without radiation). If you have had a lumpectomy and radiation of both breasts, answer these questions thinking of the breast you are least satisfied with. With your breasts in mind, in the past week, how satisfied or dissatisfied have you been with: | 0..1 | group | Enable When:
|
| BREASTQBCTP_Q01 | How you look in the mirror clothed? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q02 | The shape of your lumpectomy breast when you are wearing a bra? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q03 | How normal you feel in your clothes? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q04 | Being able to wear clothing that is more fitted? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q05 | How your lumpectomy breast sits/hangs? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q06 | How smoothly shaped your lumpectomy breast looks? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q07 | The contour (outline) of your lumpectomy breast? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q08 | How equal in size your breasts are to each other? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q09 | How normal your lumpectomy breast looks? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q10 | How much your breast look the same? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| BREASTQBCTP_Q11 | How you look in the mirror unclothed? | 0..1 | choice | Enable When:
Value Set: Satisfaction response ValueSet |
| ReconstructionFollowUp | If you have had a mastectomy and reconstruction of both breasts, answer these questions thinking of the breast you are least satisfied with. With your breasts in mind ,in the past week, how satisfied or dissatisfied have you been with: | 0..1 | group | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) |
| BREASTQRECP_Q01 | How you look in the mirror clothed? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q02 | The shape of your reconstructed breast(s) when you are wearing a bra? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q03 | How normal you feel in your clothes? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q04 | The size of your reconstructed breast(s)? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q05 | Being able to wear clothing that is more fitted? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q06 | How your breasts are lined up in relation to each other? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q07 | How comfortably your bras fit? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q08 | The softness of your reconstructed breast(s)? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q09 | How equal in size your breasts are to each other? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q10 | How natural your reconstructed breast(s) looks? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q11 | How naturally your reconstructed breast(s) sits/hangs? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q12 | How your reconstructed breast(s) feel to touch? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q13 | How much your reconstructed breast(s) feels like a natural part of your body? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q14 | How closely matched (similar) your breasts are to each other? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q15 | How your reconstructed breast(s) look now compared to before you had any breast surgery? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| BREASTQRECP_Q16 | How you look in the mirror unclothed? | 0..1 | choice | Enable When: BreastQ_Surgery = Mastectomy with immediate reconstruction (Breast surgery types CodeSystem#mastectomy-with-immediate-reconstruction) Value Set: Satisfaction response ValueSet |
| Documentation for this format | ||||
Option Sets
Answer options for EORTCQLQC30_Q29
Answer options for EORTCQLQC30_Q30
IG © 2021+ HL7 International - Clinical Interoperability Council Group. Package hl7.fhir.uv.ichom-breast-cancer#1.0.0 based on FHIR 4.0.1. Generated 2023-08-21
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