Structure LinkId Text Cardinality Type Description & Constraints PatientReportedBaseline Patient-reported response at baseline (first doctors' visit) Questionnaire http://hl7.org/fhir/uv/ichom-breast-cancer/Questionnaire/PatientReportedBaseline#1.0.0 General-Information-Clinical General information 1..1 group NA-Clinical What is your medical record number? 1..1 string LastName-Clinical What is your last name? 1..1 string Demographics Demographic factors 1..1 group Sex Please indicate your sex at birth 1..1 choice Value Set: AdministrativeGender COUNTRY What is your country of residence? 1..1 choice Value Set: Iso 3166 Part 1: 3 Letter Codes Ethnicity Please indicate the ethnicity that you identify with 1..1 choice Value Set: Ethnicity Race Please indicate the biological race that you identify with 1..1 choice Value Set: Race EducationLevel Please indicate your highest level of schooling 1..1 choice Value Set: Education level of patient ValueSet RelationshipStatus Please indicate your current relationship status 1..1 choice Value Set: Relationship status of patient ValueSet MENOPAUSE Please indicate your current menopausal status 1..1 choice Enable When: Sex = Female (AdministrativeGender#female) Value Set: Menopausal status of patient ValueSet Baseline-Clinical-Factors Clinical factors 1..1 group ComorbiditiesSACQ Have you been told by a doctor that you have any of the following? 1..* choice Value Set: SACQ Patient's comorbidity history ValueSet ComorbiditiesSACQ_HeartDiseaseFU1 Do you receive treatment for heart disease (For example, angina, heart failure, or heart attack)? 0..1 boolean Enable When: ComorbiditiesSACQ = Heart disease (SNOMED CT#56265001) ComorbiditiesSACQ_HeartDiseaseFU2 Does your heart disease limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Heart disease (SNOMED CT#56265001) ComorbiditiesSACQ_HighBloodPressureFU1 Do you receive treatment for high blood pressure? 0..1 boolean Enable When: ComorbiditiesSACQ = High blood pressure (SNOMED CT#38341003) ComorbiditiesSACQ_HighBloodPressureFU2 Does your high blood pressure limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = High blood pressure (SNOMED CT#38341003) ComorbiditiesSACQ_LungDiseaseFU1 Do you receive treatment for lung disease? 0..1 boolean Enable When: ComorbiditiesSACQ = Lung disorder (SNOMED CT#19829001) ComorbiditiesSACQ_LungDiseaseFU2 Does your lung disease limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Lung disorder (SNOMED CT#19829001) ComorbiditiesSACQ_DiabetesFU1 Do you receive treatment for diabetes? 0..1 boolean Enable When: ComorbiditiesSACQ = Diabetes mellitus (SNOMED CT#73211009) ComorbiditiesSACQ_DiabetesFU2 Does your diabetes limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Diabetes mellitus (SNOMED CT#73211009) ComorbiditiesSACQ_StomachDiseaseFU1 Do you receive treatment for an ulcer or stomach disease? 0..1 boolean Enable When: ComorbiditiesSACQ = Disorder of stomach (SNOMED CT#29384001) ComorbiditiesSACQ_StomachDiseaseFU2 Does your ulcer or stomach disease limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Disorder of stomach (SNOMED CT#29384001) ComorbiditiesSACQ_KidneyDiseaseFU1 Do you receive treatment for kidney disease? 0..1 boolean Enable When: ComorbiditiesSACQ = Kidney disease (SNOMED CT#90708001) ComorbiditiesSACQ_KidneyDiseaseFU2 Does your kidney disease limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Kidney disease (SNOMED CT#90708001) ComorbiditiesSACQ_LiverDiseaseFU1 Do you receive treatment for liver disease? 0..1 boolean Enable When: ComorbiditiesSACQ = Hepatopathy (SNOMED CT#235856003) ComorbiditiesSACQ_LiverDiseaseFU2 Does your liver disease limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Hepatopathy (SNOMED CT#235856003) ComorbiditiesSACQ_BloodDiseaseFU1 Do you receive treatment for anemia or other blood disease? 0..1 boolean Enable When: ComorbiditiesSACQ = Disorder of cellular component of blood (disorder) (SNOMED CT#414022008) ComorbiditiesSACQ_BloodDiseaseFU2 Does your anemia or other blood disease limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Disorder of cellular component of blood (disorder) (SNOMED CT#414022008) ComorbiditiesSACQ_CancerFU1 Do you receive treatment for cancer/another cancer? 0..1 boolean Enable When: ComorbiditiesSACQ = Malignant tumour (SNOMED CT#363346000) ComorbiditiesSACQ_CancerFU2 Does your cancer/other cancer limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Malignant tumour (SNOMED CT#363346000) ComorbiditiesSACQ_DepressionFU1 Do you receive treatment for depression? 0..1 boolean Enable When: ComorbiditiesSACQ = Depressive disorder (SNOMED CT#35489007) ComorbiditiesSACQ_DepressionFU2 Does your depression limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Depressive disorder (SNOMED CT#35489007) ComorbiditiesSACQ_OsteoarthritisFU1 Do you receive treatment for osteoarthritis/degenerative arthritis? 0..1 boolean Enable When: ComorbiditiesSACQ = Osteoarthritis (disorder) (SNOMED CT#396275006) ComorbiditiesSACQ_OsteoarthritisFU2 Does your osteoarthritis/degenerative arthritis limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Osteoarthritis (disorder) (SNOMED CT#396275006) ComorbiditiesSACQ_BackPainFU1 Do you receive treatment for back pain? 0..1 boolean Enable When: ComorbiditiesSACQ = Backache (SNOMED CT#161891005) ComorbiditiesSACQ_BackPainFU2 Does your back pain limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Backache (SNOMED CT#161891005) ComorbiditiesSACQ_RheumatoidArthritisFU1 Do you receive treatment for rheumatoid arthritis? 0..1 boolean Enable When: ComorbiditiesSACQ = Rheumatoid arthritis (SNOMED CT#69896004) ComorbiditiesSACQ_RheumatoidArthritisFU2 Does your rheumatoid arthritis limit your activities? 0..1 boolean Enable When: ComorbiditiesSACQ = Rheumatoid arthritis (SNOMED CT#69896004) ComorbiditiesSACQ_Other What other medical problems are you experiencing? 0..1 text Enable When: ComorbiditiesSACQ = other (NullFlavor#OTH) Treatment-Variables Treatment Variables 1..1 group PatientEducation Did you feel you received sufficient information about your treatment options? 1..1 choice Value Set: Patient Treatment Education ValueSet 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 IntroBreastQ With your breasts in mind, or if you have had a mastectomy, with your breast area in mind, in the past 2 weeks, how satisfied or dissatisfied have you been with: 0..1 group BREASTQMAST_Q01 How you look in the mirror clothed? 1..1 choice Value Set: Satisfaction response ValueSet BREASTQMAST_Q02 How comfortable your bras fit? 1..1 choice Value Set: Satisfaction response ValueSet BREASTQMAST_Q03 Being able to wear clothing that is more fitted? 1..1 choice Value Set: Satisfaction response ValueSet BREASTQMAST_Q04 How you look in the mirror unclothed? 1..1 choice Value Set: Satisfaction response ValueSet Documentation for this format Option Sets Answer options for EORTCQLQC30_Q29 1 2 3 4 5 6 7 Answer options for EORTCQLQC30_Q30 1 2 3 4 5 6 7
HL7 International - Clinical Interoperability Council Group
Patient-reported response at baseline (first doctors' visit)
Please indicate the ethnicity that you identify with
Please indicate the biological race that you identify with
Please indicate your highest level of schooling
Please indicate your current relationship status
Please indicate your current menopausal status
Have you been told by a doctor that you have any of the following?
Do you receive treatment for heart disease (For example, angina, heart failure, or heart attack)?
Does your heart disease limit your activities?
Do you receive treatment for high blood pressure?
Does your high blood pressure limit your activities?
Do you receive treatment for lung disease?
Does your lung disease limit your activities?
Does your diabetes limit your activities?
Do you receive treatment for an ulcer or stomach disease?
Does your ulcer or stomach disease limit your activities?
Do you receive treatment for kidney disease?
Does your kidney disease limit your activities?
Do you receive treatment for liver disease?
Does your liver disease limit your activities?
Do you receive treatment for anemia or other blood disease?
Does your anemia or other blood disease limit your activities?
Do you receive treatment for cancer/another cancer?
Does your cancer/other cancer limit your activities?
Do you receive treatment for depression?
Does your depression limit your activities?
Do you receive treatment for osteoarthritis/degenerative arthritis?
Does your osteoarthritis/degenerative arthritis limit your activities?
Does your back pain limit your activities?
Do you receive treatment for rheumatoid arthritis?
Does your rheumatoid arthritis limit your activities?
What other medical problems are you experiencing?
Did you feel you received sufficient information about your treatment options?
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.
Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase?
Do you have any trouble taking a long walk?
Do you have any trouble taking a short walk outside of the house?
Do you need to stay in bed or a chair during the day?
Do you need help with eating, dressing, washing yourself or using the toilet?
Were you limited in doing either your work or other daily activities?
Were you limited in pursuing your hobbies or other leisure time activities?
Did pain interfere with your daily activities?
Have you had difficulty in concentrating on things, like reading a newspaper or watching television?
Have you had difficulty remembering things?
Has your physical condition or medical treatment interfered with your family life?
Has your physical condition or medical treatment interfered with your social activities?
Has your physical condition or medical treatment caused you financial difficulties?
For the following questions please select the number between 1 and 7 that best applies to you, with 1 = Very poor and 7 = Excellent.
How would you rate your overall health during the past week?
How would you rate your overall quality of life during the past week?
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:
Have food and drink tasted different than usual?
Have your eyes been painful, irritated or watery?
Have you been upset by the loss of your hair?
Have you felt physically less attractive as a result of your disease or treatment?
Have you felt less feminine as a result of your disease or treatment?
Have you had problems looking at yourself naked?
Have you been dissatisfied with your body?
Have you worried about your health in the future?
Have you been sexually active? (with or without intercourse)
To what extent were you sexually active? (with or without intercourse)
Have you had problems raising your arm or moving it sideways?
Have you had any pain in the area of your affected breast?
Has the area of your affected breast been swollen?
Has the area of your affected breast been oversensitive?
Have you had skin problems on or in the area of your affected breast (e.g., itchy, dry, flaky)?
Have you had any reddening in your mouth?
Have you had pain in your hands or feet?
Have you had any redenning on your hands or feet?
Have you had tingling in your fingers or toes?
Have you had numbness in your fingers or toes?
Have you had aches or pains in your bones?
Have you had aches or pains in your muscles?
Please answer the following two questions only if you have been sexually active:
Have you had pain in your vagina during sexual activity?
Have you experienced a dry vagina during sexual activity?
Have you been satisfied with the cosmetic result of the surgery?
Have you been satisfied with the appearance of the skin of your affected breast (thoracic area)?
With your breasts in mind, or if you have had a mastectomy, with your breast area in mind, in the past 2 weeks, how satisfied or dissatisfied have you been with:
Being able to wear clothing that is more fitted?