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44399

Description

ICHOM Craniofacial Microsomia data collection Version 1.0.4 April 18th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Craniofacial Microsomia, the following conditions and treatment approaches (or interventions) are covered by our Standard Set: Conditions*: Patient population defined as: 2 major criteria or 1 major + 1 minor criteria or 3+ minor criteria Major criteria: Mandibular hypoplasia | Microtia | Orbital/facial bone hypoplasia Assymetric facial movement Minor criteria: Facial soft tissue deficiency | Pre-auricular tags | Macrostomia | Clefting Epibulbar dermoids | Hemivertabrae Treatment Approaches: Plastic Surgery | Maxillofacial Surgery | Dentistry and Orthodontics | Otolaryngology |Ophthalmology | Pediatrics | Speech and Language | Psychology/Psychiatry | Nursing | Feeding/Nutrition | Audiology | Social Care | * Excluded diagnoses: Mandibulofacial dysostosis with microcephaly, Townes-Brocks Syndrome, Treacher Collins Syndrome, Auriculocondylar Syndrome, Bixler Syndrome, Branchiootorenal (BOR) Syndrome, CHARGE Syndrome, Miller Syndrome, Nager Syndrome, Oculoauriculofrontonasal Syndrome, Parry Rhomborg, Branchiooculofacial Syndromes (BOFS), isolated typical Tessier clefting (with no associated facial hypoplasia). This document contains the 22 old years Patient-reported Form. It has to be filled in when the patient is 22 years old. If the patient won't be able to fill in by himself/herself, the form can also be fill in by the parent(s). Collecting Patient-Reported Outcome Measures: Cleft Q - Patient/parent. As there is no permission for use of this questionnaire, only the subscores of each part will be included in this version of the standard set. For more information see: Klassen AF, Riff KWW, Longmire NM, et al. Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries. CMAJ. 2018;190(15):E455–E462. doi:10.1503/cmaj.170289, https://milo.mcmaster.ca/Copyrighted%20Works/questionnaires#Cleft-Q Young Person - CORE - Patient/parent. The YP-CORE is free for all health care organizations, and a license is not needed. Any organisation is free to reproduce the CORE Instruments in software, as well as on paper, under the terms of the Creative Commons Attribution-NoDerivatives 4.0 International (CC BY-ND 4.0) licence without payment of any licence fee. Hospital Anxiety and Depression Scale (HADS) – Patient. As there is no free licence for this scale, only the both two subscores (HADS Depression subscore, HADS Anxiety Suscore) will be included in this version of the standard set. Craniofacial Experiences Questionnaire (CFEQ) –Patient. The CFEQ is free for all health care organizations, and a license is not needed. For more information see: Roberts, R. M., & Shute, R. (2011). Living with a Craniofacial Condition: Development of the Craniofacial Experiences Questionnaire (CFEQ) for Adolescents and Their Parents. The Cleft Palate-Craniofacial Journal, 48(6), 727–735. PCC – Clinician. The PCC is free for all health care organizations, and a license is not needed. Intelligibility in Context Scale (ICS) - Parent/parent. The ICS is free for all health care organizations, and a license is not needed. For citation use CC 3.0 by-nc-nd. For more information see: http://www.csu.edu.au/research/multilingual-speech/ics WHO Growth Charts – Clinician. The WHO Growth Charts are free for all health care organizations, and a license is not needed. Pediatric Sleep Questionnaire (PSQ) – Parent. As a license agreement is needed for use of this questionnaire, only the total score will be includede in this version of the standard set. Distress Thermometer – Parent. As the source of the distress thermometer questions are not sure, only a text-item will be included in this version of the standard set. Phenotypic Assessment Tool (PAT-CFM) – Clinician. As a license agreement is needed for use of the PAT-CFM, only a text item is included in this version of the standard set. For more information see: Birgfeld C B, Luquetti D V, Gougoutas A J. et al.A phenotypic assessment tool for craniofacial microsomia. Plast Reconstr Surg. 2011;127(1):313–320. Ear Health-Related Quality of Life (HRQoL) - Patient/parent. The Ear HRQoL is free for all health care organizations, according to ICHOM. For more information see: Akter F, Mennie J C, Stewart K. et al. Patient reported outcome measures in microtia surgery. J Plast Reconstr Aesthet Surg. 2017 Mar;70(3):416-424. doi: 10.1016/j.bjps.2016.10.023. Epub 2016 Nov 23. COHIP Oral Symptoms Scale - Patient/parent: The COHIP is free for all health care organizations, according to ICHOM. For more information see: Broder HL, McGrath C, Cisneros GJ. Questionnaire development: Face validity and item impact testing of the child oral health impact profile Community Dent Oral Epidemiol 2007; 35 Suppl 1:8-19. The Standard set of ICHOM was supported by the Boston Children’s Hospital, the University Medical Center Rotterdam, the Great Ormond Street Hospital for Children and by th SickKids. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Keywords

Versions (5)
  1. 11/7/19 11/7/19 -
  2. 11/19/19 11/19/19 -
  3. 11/21/19 11/21/19 - Sarah Riepenhausen
  4. 4/30/20 4/30/20 - Sarah Riepenhausen
  5. 9/20/21 9/20/21 -
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ICHOM

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September 20, 2021

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    ICHOM Craniofacial Microsomia

    English

    22 years old - Patient-reported

    1 forms  
    Administrative Data
    Description

    Administrative Data

    Alias
    UMLS CUI-1
    C1320722
    Indicate the patient's medical record number
    Description

    This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: Patients with craniofacial microsomia TIMING: On all forms REPORTING SOURCE: Administrative data RESPONSE OPTIONS: According to institution

    Data type

    integer

    Alias
    UMLS CUI [1]
    C1269815
    Psychometrics and Sociometrics
    Description

    Psychometrics and Sociometrics

    Alias
    UMLS CUI-1
    C0033920
    UMLS CUI-2
    C0871913
    Cleft-Q Social Function, total score
    Description

    As there is a permission for use of this questionnaire, the actual 10 questions are not included in this version of the standard set. Instead you can note the total score for each part of the CLEFT-Q. The ICHOM OID's are: CLEFTQSOCLIFE_Q01 to CLEFTQSOCLIFE_Q10. Inclusion criteria: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip Timing: 8, 22 years Reporting Source: Patient-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C4321245
    UMLS CUI [1,2]
    C0008925
    UMLS CUI [1,3]
    C0034394
    UMLS CUI [1,4]
    C0728831
    UMLS CUI [1,5]
    C2964552
    UMLS CUI [2]
    C0542341
    Health-related Quality of Life
    Description

    Health-related Quality of Life

    Alias
    UMLS CUI-1
    C4279947
    Here is a list of things which people with a craniofacial condition sometimes have to deal with. I am interested in what you have had to deal with. Please read each problem and think if this has happened to you in the last year. Tick the box that says how often it has happened. 1. Having difficulty being accepted as a friend by others my age
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Response option: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0332218
    UMLS CUI [2,2]
    C0683547
    2. Not being invited to do things with others my age
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0683547
    UMLS CUI [2,2]
    C1298908
    UMLS CUI [2,3]
    C2826348
    3. Worrying that I will have trouble finding a boyfriend/girlfriend
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C3169394
    UMLS CUI [2,2]
    C0439849
    4. Being asked questions by people about my craniofacial condition
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0376634
    UMLS CUI [2,2]
    C1522634
    UMLS CUI [2,3]
    C0027361
    5. Having people make comments about my craniofacial condition
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C3482948
    UMLS CUI [2,2]
    C0376634
    6. Being stared at by people I don’t know
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0871443
    UMLS CUI [2,2]
    C0423086
    7. Being teased because of my craniofacial condition
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C4330906
    UMLS CUI [2,2]
    C0376634
    8. Having problems with my school work
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2]
    C0580094
    9. Not being able to do things as well as others my age
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C1298908
    UMLS CUI [2,2]
    C3259648
    UMLS CUI [2,3]
    C0030767
    10. People having trouble understanding what I say
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2]
    C3166351
    11. Having problems doing things like catching a ball or playing sport
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C1546466
    UMLS CUI [2,2]
    C0038039
    12. Having problems with pain
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0033213
    UMLS CUI [2,2]
    C0030193
    13. Having problems with getting tired
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0033213
    UMLS CUI [2,2]
    C0015672
    14. Having trouble finding a doctor or dentist to help with my treatment who is close to where I live
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0033213
    UMLS CUI [2,2]
    C0031831
    UMLS CUI [2,3]
    C1706276
    UMLS CUI [2,4]
    C0237096
    UMLS CUI [3,1]
    C0033213
    UMLS CUI [3,2]
    C0011441
    UMLS CUI [3,3]
    C1706276
    UMLS CUI [3,4]
    C0237096
    15. Missing out on school because of being at the hospital or at appointments
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2]
    C4330694
    16. Not wanting to have treatment that my doctors want me to have
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2]
    C0040809
    17. Having an operation which I was worried or stressed about
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0543467
    UMLS CUI [2,2]
    C0233481
    18. Not liking the way I look
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2]
    C3274925
    19. Thinking about why I have a craniofacial condition
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0039869
    UMLS CUI [2,2]
    C0376634
    UMLS CUI [2,3]
    C0566251
    20. Trying to wear my clothes or hair or holding my head so you can’t notice my craniofacial condition
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C0597530
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C4062112
    UMLS CUI [2,2]
    C0376634
    Now here is a list of good things that sometimes happen to people with a craniofacial condition or qualities they can have. Please read each good thing, think if this has applied to you in the last year and tick the box that says how often it has happened. 1. Being able to do things that other people can’t do because of the way my craniofacial condition has made my body
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0085732
    UMLS CUI [2,2]
    C0085978
    UMLS CUI [2,3]
    C0376634
    2. Being kinder to people than other young people
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C2700214
    UMLS CUI [2,2]
    C0439093
    UMLS CUI [2,3]
    C0030767
    3. Getting more out of life than other young people
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C2984051
    UMLS CUI [2,2]
    C0439093
    UMLS CUI [2,3]
    C0030767
    4. Being more independent than other young people my age
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0085862
    UMLS CUI [2,2]
    C0439093
    UMLS CUI [2,3]
    C0030767
    5. Being more understanding of other people with a disability than others
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0582778
    UMLS CUI [2,2]
    C0018576
    UMLS CUI [2,3]
    C0439093
    UMLS CUI [2,4]
    C0205394
    6. Being nicer to people who are different in some way
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C2700214
    UMLS CUI [2,2]
    C0027361
    UMLS CUI [2,3]
    C1705242
    7. Feeling closer to God than other young people
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C1527305
    UMLS CUI [2,2]
    C3810854
    UMLS CUI [2,3]
    C0681169
    UMLS CUI [2,4]
    C0439093
    UMLS CUI [2,5]
    C0030767
    8. Getting help with my school work
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0518076
    UMLS CUI [2,2]
    C1269765
    9. Getting support from my doctors and other people in the hospital
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C1521721
    UMLS CUI [2,2]
    C0018724
    10.Getting to meet famous or important people
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0556656
    UMLS CUI [2,2]
    C1549598
    11. Getting to do special things for people with a disability (like camps or sports)
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C2828361
    UMLS CUI [2,2]
    C0205555
    UMLS CUI [2,3]
    C3843676
    UMLS CUI [2,4]
    C0018576
    12. Getting special presents or treats
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0205555
    UMLS CUI [2,2]
    C1136188
    13. Getting extra attention
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0205172
    UMLS CUI [2,2]
    C0004268
    14. My family getting closer because of my craniofacial condition
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0205172
    UMLS CUI [2,2]
    C3810854
    UMLS CUI [2,3]
    C0015576
    UMLS CUI [2,4]
    C0376634
    15. Helping other people be more aware of people with disabilities
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0018896
    UMLS CUI [2,2]
    C0027361
    UMLS CUI [2,3]
    C0205172
    UMLS CUI [2,4]
    C0004448
    UMLS CUI [2,5]
    C0018576
    16. Helping other young people know how to relate to people who are different in some way
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0018896
    UMLS CUI [2,2]
    C0027361
    UMLS CUI [2,3]
    C0439849
    UMLS CUI [2,4]
    C0027361
    UMLS CUI [2,5]
    C1705242
    17. Making friends more easily than other young people do
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0332219
    UMLS CUI [2,2]
    C0516939
    UMLS CUI [2,3]
    C0439093
    UMLS CUI [2,4]
    C0030767
    18. Having more really strong friendships than others my age
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0442821
    UMLS CUI [2,2]
    C0178647
    UMLS CUI [2,3]
    C0439093
    UMLS CUI [2,4]
    C0030767
    19. Feeling good ‘cos I know that the doctors are keeping a close eye on me so if there is something wrong, it won’t get missed
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0376634
    UMLS CUI [1,2]
    C0596545
    UMLS CUI [1,3]
    C1446409
    UMLS CUI [1,4]
    C0034394
    UMLS CUI [2,1]
    C0237935
    UMLS CUI [2,2]
    C0031831
    Behavior/Anxiety/Depression/PTSD
    Description

    Behavior/Anxiety/Depression/PTSD

    Alias
    UMLS CUI-1
    C0004927
    UMLS CUI-2
    C0003467
    UMLS CUI-3
    C0011581
    UMLS CUI-4
    C0038436
    Hospital Anxiety (HAD-Scale), subscore
    Description

    As there is no free licence for this scale, the actual 7 questions to hospital anxiety of this scale are not included in this version of the standard set. Instead you can note the subscore. ICHOM OID's are: HADS_QA1 to HADS_QA7. Inclusion criteria: Patients with craniofacial microsomia Timing: 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C3539657
    UMLS CUI [1,2]
    C0003467
    UMLS CUI [1,3]
    C0449820
    Depression (HAD-Scale), subscore
    Description

    As there is no free licence for this scale, the actual 7 questions to depression of this scale are not included in this version of the standard set. Instead you can note the subscore. ICHOM OID's are: HADS_QD1 to HADS_QD7. Inclusion criteria: Patients with craniofacial microsomia Timing: 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C3539657
    UMLS CUI [1,2]
    C0011581
    UMLS CUI [1,3]
    C0449820
    Airway and Breathing
    Description

    Airway and Breathing

    Alias
    UMLS CUI-1
    C0458827
    UMLS CUI-2
    C0035203
    Has your child/have you required surgery on their/your jaw for their/your airway?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0407713
    Does your child/do you require airway support when sleeping – CPAP?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0199451
    UMLS CUI [1,2]
    C0037313
    Has the patient had surgery for the airway?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0458827
    UMLS CUI [1,2]
    C0543467
    Speech
    Description

    Speech

    Alias
    UMLS CUI-1
    C0037817
    Cleft-Q Speech Distress, total score
    Description

    As there is a permission for use of this questionnaire, the actual 10 questions are not included in this version of the standard set. Instead you can note the total score for each part. ICHOM OID's are: CLEFTQSPEAK_Q01 to CLEFTQSPEAK_Q10. Inclusion criteria: Patients with cleft lip and palate, patients with cleft palate Timing: 12, 22 years Reporting source: Patient-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C4321245
    UMLS CUI [1,2]
    C0008925
    UMLS CUI [1,3]
    C0034394
    UMLS CUI [1,4]
    C2964552
    UMLS CUI [2]
    C0037822
    Cleft-Q Speech Function, total score
    Description

    As there is a permission for use of this questionnaire, the actual 12 questions are not included in this version of the standard set. Instead you can note the total score for each part. ICHOM OID's are: CLEFTQSPEECH_Q01 to CLEFTQSPEECH_Q12. Inclusion criteria: Patients with cleft lip and palate, patients with cleft palate Timing: 12, 22 years Reporting source: Patient-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C4321245
    UMLS CUI [1,2]
    C0008925
    UMLS CUI [1,3]
    C0034394
    UMLS CUI [1,4]
    C2964552
    UMLS CUI [2,1]
    C0037817
    UMLS CUI [2,2]
    C0542341
    Mastication and Occlusion
    Description

    Mastication and Occlusion

    Alias
    UMLS CUI-1
    C0024888
    UMLS CUI-2
    C0011382
    Cleft-Q Eating and Drinking, total score
    Description

    As there is a permission for use of this questionnaire, the actual 9 questions are not included in this version of the standard set. Instead you can note the total score for each part. ICHOM OID's are: CLEFTQED_Q01 to CLEFTQED_Q09. Inclusion criteria: Patients with cleft lip and palate, patients with cleft palate Timing: 8, 12, 22 years Reporting source: Patient-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C4321245
    UMLS CUI [1,2]
    C0008925
    UMLS CUI [1,3]
    C0034394
    UMLS CUI [1,4]
    C2964552
    UMLS CUI [2,1]
    C0013470
    UMLS CUI [2,2]
    C0684271
    Oral health
    Description

    Oral health

    Alias
    UMLS CUI-1
    C0029162
    Choose the answer the best describes you in the past 3 months regarding your teeth, mouth, or face. 1. Have you had pain in your teeth (toothache)?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0034394
    UMLS CUI [1,2]
    C2013427
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0040460
    2. Have you had discolored teeth or spots on your teeth?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0034394
    UMLS CUI [1,2]
    C2013427
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0040434
    3. Have you had crooked teeth or spaces between your teeth?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0034394
    UMLS CUI [1,2]
    C2013427
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C1852504
    4. Have you had bad breath?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0034394
    UMLS CUI [1,2]
    C2013427
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0018520
    5. Have you had bleeding gums?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0034394
    UMLS CUI [1,2]
    C2013427
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0017565
    Appearance
    Description

    Appearance

    Alias
    UMLS CUI-1
    C0700364
    The following questions are also related to appearance, but in more detail. We would like you to answer by giving a score from 1 to 5, using the scale below. Section A: We've marked out 9 key areas of a 'normal' ear below. We'd like you to find them on your reconstructed ear and give them a score using the scale above. 1) Helical rim
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2,1]
    C0229304
    UMLS CUI [2,2]
    C4554553
    2) Scaphoid fossa
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0458629
    3) Conchal bowl
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0229316
    4) Anti-tragus
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0229314
    5) Triangular fossa
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0931624
    6) Anti-helix
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0229308
    7) Tragus
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C1000996
    8) Incisura
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0229313
    9) Lobe
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0229315
    Section B: How satisfied are you with the following (again please use the scale above): 10) The size of your ear? (Big or small)
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2,1]
    C0013443
    UMLS CUI [2,2]
    C0456389
    11) The projection of your ear? (How much it sticks out)
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2]
    C0849820
    12) The position of your ear? (Too high or low; see Picture I)                    
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2,1]
    C0013443
    UMLS CUI [2,2]
    C0733755
    13) The rotation of your ear? (How much your ear tilts)                  
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [1,4]
    C0013443
    UMLS CUI [1,5]
    C0035868
    14) The skin covering your ear? (quality, colour, hair)
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2,1]
    C1123023
    UMLS CUI [2,2]
    C0013443
    UMLS CUI [2,3]
    C0332306
    UMLS CUI [3,1]
    C1123023
    UMLS CUI [3,2]
    C0013443
    UMLS CUI [3,3]
    C0009393
    UMLS CUI [4,1]
    C1123023
    UMLS CUI [4,2]
    C0013443
    UMLS CUI [4,3]
    C0018494
    15) The scars around your ear and scalp?
    Description

    Inclusion criteria: Patients with craniofacial microsomia Timing: 8, 12, 22 years Reporting Source: Patient/parent-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0013443
    UMLS CUI [1,2]
    C4279947
    UMLS CUI [1,3]
    C0681889
    UMLS CUI [2,1]
    C0241158
    UMLS CUI [2,2]
    C0013443
    UMLS CUI [3,1]
    C0241158
    UMLS CUI [3,2]
    C0036270
    Cleft-Q Appearance of the Face, total score
    Description

    As there is a permission for use of this questionnaire, the actual 9 questions are not included in this version of the standard set. Instead you can note the total score for each part. ICHOM OID's are: CLEFTQFACE_Q01 to CLEFTQFACE_Q09. Inclusion criteria: Patients with cleft lip and palate, patients with cleft palate Timing: 8, 12, 22 years Reporting source: Patient-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C4321245
    UMLS CUI [1,2]
    C0008925
    UMLS CUI [1,3]
    C0034394
    UMLS CUI [1,4]
    C2964552
    UMLS CUI [2,1]
    C0700364
    UMLS CUI [2,2]
    C0015450
    Cleft-Q Appearance of the Jaws, total score
    Description

    As there is a permission for use of this questionnaire, the actual 7 questions are not included in this version of the standard set. Instead you can note the total score for each part. ICHOM OID's are: CLEFTQJAW_Q01 to CLEFTQJAW_Q07. Inclusion criteria: Patients with cleft lip and palate, patients with cleft palate Timing: 8, 12, 22 years Reporting source: Patient-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C4321245
    UMLS CUI [1,2]
    C0008925
    UMLS CUI [1,3]
    C0034394
    UMLS CUI [1,4]
    C2964552
    UMLS CUI [2,1]
    C0700364
    UMLS CUI [2,2]
    C0022359
    Cleft-Q Appearance of the Teeth, total score
    Description

    As there is a permission for use of this questionnaire, the actual 8 questions are not included in this version of the standard set. Instead you can note the total score for each part. ICHOM OID's are: CLEFTQDENTAL_Q01 to CLEFTQDENTAL_Q08. Inclusion criteria: Patients with cleft lip and palate, patients with cleft palate Timing: 8, 12, 22 years Reporting source: Patient-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C4321245
    UMLS CUI [1,2]
    C0008925
    UMLS CUI [1,3]
    C0034394
    UMLS CUI [1,4]
    C2964552
    UMLS CUI [2,1]
    C0700364
    UMLS CUI [2,2]
    C0040426
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    Similar models

    22 years old - Patient-reported

    1 forms
    Name
    Type
    Description | Question | Decode (Coded Value)
    Data type
    Alias
    Item Group
    Administrative Data
    C1320722 (UMLS CUI-1)
    Patient ID
    Item
    Indicate the patient's medical record number
    integer
    C1269815 (UMLS CUI [1])
    Item Group
    Psychometrics and Sociometrics
    C0033920 (UMLS CUI-1)
    C0871913 (UMLS CUI-2)
    Cleft-Q Social Function, total score
    Item
    Cleft-Q Social Function, total score
    integer
    C4321245 (UMLS CUI [1,1])
    C0008925 (UMLS CUI [1,2])
    C0034394 (UMLS CUI [1,3])
    C0728831 (UMLS CUI [1,4])
    C2964552 (UMLS CUI [1,5])
    C0542341 (UMLS CUI [2])
    Item Group
    Health-related Quality of Life
    C4279947 (UMLS CUI-1)
    Item
    Here is a list of things which people with a craniofacial condition sometimes have to deal with. I am interested in what you have had to deal with. Please read each problem and think if this has happened to you in the last year. Tick the box that says how often it has happened. 1. Having difficulty being accepted as a friend by others my age
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0332218 (UMLS CUI [2,1])
    C0683547 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    Here is a list of things which people with a craniofacial condition sometimes have to deal with. I am interested in what you have had to deal with. Please read each problem and think if this has happened to you in the last year. Tick the box that says how often it has happened. 1. Having difficulty being accepted as a friend by others my age
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    2. Not being invited to do things with others my age
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0683547 (UMLS CUI [2,1])
    C1298908 (UMLS CUI [2,2])
    C2826348 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    2. Not being invited to do things with others my age
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    3. Worrying that I will have trouble finding a boyfriend/girlfriend
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C3169394 (UMLS CUI [2,1])
    C0439849 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    3. Worrying that I will have trouble finding a boyfriend/girlfriend
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    4. Being asked questions by people about my craniofacial condition
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0376634 (UMLS CUI [2,1])
    C1522634 (UMLS CUI [2,2])
    C0027361 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    4. Being asked questions by people about my craniofacial condition
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    5. Having people make comments about my craniofacial condition
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C3482948 (UMLS CUI [2,1])
    C0376634 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    5. Having people make comments about my craniofacial condition
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    6. Being stared at by people I don’t know
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0871443 (UMLS CUI [2,1])
    C0423086 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    6. Being stared at by people I don’t know
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    7. Being teased because of my craniofacial condition
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C4330906 (UMLS CUI [2,1])
    C0376634 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    7. Being teased because of my craniofacial condition
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    8. Having problems with my school work
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0580094 (UMLS CUI [2])
    Question 1 of CFEQ_YA Stressor
    Code List
    8. Having problems with my school work
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    9. Not being able to do things as well as others my age
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C1298908 (UMLS CUI [2,1])
    C3259648 (UMLS CUI [2,2])
    C0030767 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    9. Not being able to do things as well as others my age
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    10. People having trouble understanding what I say
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C3166351 (UMLS CUI [2])
    Question 1 of CFEQ_YA Stressor
    Code List
    10. People having trouble understanding what I say
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    11. Having problems doing things like catching a ball or playing sport
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C1546466 (UMLS CUI [2,1])
    C0038039 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    11. Having problems doing things like catching a ball or playing sport
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    12. Having problems with pain
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0033213 (UMLS CUI [2,1])
    C0030193 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    12. Having problems with pain
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    13. Having problems with getting tired
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0033213 (UMLS CUI [2,1])
    C0015672 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    13. Having problems with getting tired
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    14. Having trouble finding a doctor or dentist to help with my treatment who is close to where I live
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0033213 (UMLS CUI [2,1])
    C0031831 (UMLS CUI [2,2])
    C1706276 (UMLS CUI [2,3])
    C0237096 (UMLS CUI [2,4])
    C0033213 (UMLS CUI [3,1])
    C0011441 (UMLS CUI [3,2])
    C1706276 (UMLS CUI [3,3])
    C0237096 (UMLS CUI [3,4])
    Question 1 of CFEQ_YA Stressor
    Code List
    14. Having trouble finding a doctor or dentist to help with my treatment who is close to where I live
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    15. Missing out on school because of being at the hospital or at appointments
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C4330694 (UMLS CUI [2])
    Question 1 of CFEQ_YA Stressor
    Code List
    15. Missing out on school because of being at the hospital or at appointments
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    16. Not wanting to have treatment that my doctors want me to have
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0040809 (UMLS CUI [2])
    Question 1 of CFEQ_YA Stressor
    Code List
    16. Not wanting to have treatment that my doctors want me to have
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    17. Having an operation which I was worried or stressed about
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0543467 (UMLS CUI [2,1])
    C0233481 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    17. Having an operation which I was worried or stressed about
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    18. Not liking the way I look
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C3274925 (UMLS CUI [2])
    Question 1 of CFEQ_YA Stressor
    Code List
    18. Not liking the way I look
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    19. Thinking about why I have a craniofacial condition
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0039869 (UMLS CUI [2,1])
    C0376634 (UMLS CUI [2,2])
    C0566251 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    19. Thinking about why I have a craniofacial condition
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    20. Trying to wear my clothes or hair or holding my head so you can’t notice my craniofacial condition
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C0597530 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C4062112 (UMLS CUI [2,1])
    C0376634 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    20. Trying to wear my clothes or hair or holding my head so you can’t notice my craniofacial condition
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    Now here is a list of good things that sometimes happen to people with a craniofacial condition or qualities they can have. Please read each good thing, think if this has applied to you in the last year and tick the box that says how often it has happened. 1. Being able to do things that other people can’t do because of the way my craniofacial condition has made my body
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0085732 (UMLS CUI [2,1])
    C0085978 (UMLS CUI [2,2])
    C0376634 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    Now here is a list of good things that sometimes happen to people with a craniofacial condition or qualities they can have. Please read each good thing, think if this has applied to you in the last year and tick the box that says how often it has happened. 1. Being able to do things that other people can’t do because of the way my craniofacial condition has made my body
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    2. Being kinder to people than other young people
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C2700214 (UMLS CUI [2,1])
    C0439093 (UMLS CUI [2,2])
    C0030767 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    2. Being kinder to people than other young people
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    3. Getting more out of life than other young people
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C2984051 (UMLS CUI [2,1])
    C0439093 (UMLS CUI [2,2])
    C0030767 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    3. Getting more out of life than other young people
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    4. Being more independent than other young people my age
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0085862 (UMLS CUI [2,1])
    C0439093 (UMLS CUI [2,2])
    C0030767 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    4. Being more independent than other young people my age
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    5. Being more understanding of other people with a disability than others
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0582778 (UMLS CUI [2,1])
    C0018576 (UMLS CUI [2,2])
    C0439093 (UMLS CUI [2,3])
    C0205394 (UMLS CUI [2,4])
    Question 1 of CFEQ_YA Stressor
    Code List
    5. Being more understanding of other people with a disability than others
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    6. Being nicer to people who are different in some way
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C2700214 (UMLS CUI [2,1])
    C0027361 (UMLS CUI [2,2])
    C1705242 (UMLS CUI [2,3])
    Question 1 of CFEQ_YA Stressor
    Code List
    6. Being nicer to people who are different in some way
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    7. Feeling closer to God than other young people
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C1527305 (UMLS CUI [2,1])
    C3810854 (UMLS CUI [2,2])
    C0681169 (UMLS CUI [2,3])
    C0439093 (UMLS CUI [2,4])
    C0030767 (UMLS CUI [2,5])
    Question 1 of CFEQ_YA Stressor
    Code List
    7. Feeling closer to God than other young people
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    8. Getting help with my school work
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0518076 (UMLS CUI [2,1])
    C1269765 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    8. Getting help with my school work
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    9. Getting support from my doctors and other people in the hospital
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C1521721 (UMLS CUI [2,1])
    C0018724 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    9. Getting support from my doctors and other people in the hospital
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    10.Getting to meet famous or important people
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0556656 (UMLS CUI [2,1])
    C1549598 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    10.Getting to meet famous or important people
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    11. Getting to do special things for people with a disability (like camps or sports)
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C2828361 (UMLS CUI [2,1])
    C0205555 (UMLS CUI [2,2])
    C3843676 (UMLS CUI [2,3])
    C0018576 (UMLS CUI [2,4])
    Question 1 of CFEQ_YA Stressor
    Code List
    11. Getting to do special things for people with a disability (like camps or sports)
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    12. Getting special presents or treats
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0205555 (UMLS CUI [2,1])
    C1136188 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    12. Getting special presents or treats
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    13. Getting extra attention
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0205172 (UMLS CUI [2,1])
    C0004268 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    13. Getting extra attention
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    14. My family getting closer because of my craniofacial condition
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0205172 (UMLS CUI [2,1])
    C3810854 (UMLS CUI [2,2])
    C0015576 (UMLS CUI [2,3])
    C0376634 (UMLS CUI [2,4])
    Question 1 of CFEQ_YA Stressor
    Code List
    14. My family getting closer because of my craniofacial condition
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    15. Helping other people be more aware of people with disabilities
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0018896 (UMLS CUI [2,1])
    C0027361 (UMLS CUI [2,2])
    C0205172 (UMLS CUI [2,3])
    C0004448 (UMLS CUI [2,4])
    C0018576 (UMLS CUI [2,5])
    Question 1 of CFEQ_YA Stressor
    Code List
    15. Helping other people be more aware of people with disabilities
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    16. Helping other young people know how to relate to people who are different in some way
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0018896 (UMLS CUI [2,1])
    C0027361 (UMLS CUI [2,2])
    C0439849 (UMLS CUI [2,3])
    C0027361 (UMLS CUI [2,4])
    C1705242 (UMLS CUI [2,5])
    Question 1 of CFEQ_YA Stressor
    Code List
    16. Helping other young people know how to relate to people who are different in some way
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    17. Making friends more easily than other young people do
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0332219 (UMLS CUI [2,1])
    C0516939 (UMLS CUI [2,2])
    C0439093 (UMLS CUI [2,3])
    C0030767 (UMLS CUI [2,4])
    Question 1 of CFEQ_YA Stressor
    Code List
    17. Making friends more easily than other young people do
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    18. Having more really strong friendships than others my age
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0442821 (UMLS CUI [2,1])
    C0178647 (UMLS CUI [2,2])
    C0439093 (UMLS CUI [2,3])
    C0030767 (UMLS CUI [2,4])
    Question 1 of CFEQ_YA Stressor
    Code List
    18. Having more really strong friendships than others my age
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    19. Feeling good ‘cos I know that the doctors are keeping a close eye on me so if there is something wrong, it won’t get missed
    integer
    C0376634 (UMLS CUI [1,1])
    C0596545 (UMLS CUI [1,2])
    C1446409 (UMLS CUI [1,3])
    C0034394 (UMLS CUI [1,4])
    C0237935 (UMLS CUI [2,1])
    C0031831 (UMLS CUI [2,2])
    Question 1 of CFEQ_YA Stressor
    Code List
    19. Feeling good ‘cos I know that the doctors are keeping a close eye on me so if there is something wrong, it won’t get missed
    CL Item
    Never (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes  (1)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (2)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (3)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item Group
    Behavior/Anxiety/Depression/PTSD
    C0004927 (UMLS CUI-1)
    C0003467 (UMLS CUI-2)
    C0011581 (UMLS CUI-3)
    C0038436 (UMLS CUI-4)
    Hospital Anxiety (HAD-Scale), subscore
    Item
    Hospital Anxiety (HAD-Scale), subscore
    integer
    C3539657 (UMLS CUI [1,1])
    C0003467 (UMLS CUI [1,2])
    C0449820 (UMLS CUI [1,3])
    Depression (HAD-Scale), subscore
    Item
    Depression (HAD-Scale), subscore
    integer
    C3539657 (UMLS CUI [1,1])
    C0011581 (UMLS CUI [1,2])
    C0449820 (UMLS CUI [1,3])
    Item Group
    Airway and Breathing
    C0458827 (UMLS CUI-1)
    C0035203 (UMLS CUI-2)
    Item
    Has your child/have you required surgery on their/your jaw for their/your airway?
    integer
    C0407713 (UMLS CUI [1])
    Jaw surgery
    Code List
    Has your child/have you required surgery on their/your jaw for their/your airway?
    CL Item
    No  (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Item
    Does your child/do you require airway support when sleeping – CPAP?
    integer
    C0199451 (UMLS CUI [1,1])
    C0037313 (UMLS CUI [1,2])
    Jaw surgery
    Code List
    Does your child/do you require airway support when sleeping – CPAP?
    CL Item
    No  (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Item
    Has the patient had surgery for the airway?
    integer
    C0458827 (UMLS CUI [1,1])
    C0543467 (UMLS CUI [1,2])
    Jaw surgery
    Code List
    Has the patient had surgery for the airway?
    CL Item
    Tonsillectomy (1)
    C0040423 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Adenoidectomy (2)
    C0001425 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Mandibular distraction  (3)
    C0024687 (UMLS CUI-1)
    C0524975 (UMLS CUI-2)
    (Comment:en)
    Item Group
    Speech
    C0037817 (UMLS CUI-1)
    Cleft-Q Speech Distress, total score
    Item
    Cleft-Q Speech Distress, total score
    integer
    C4321245 (UMLS CUI [1,1])
    C0008925 (UMLS CUI [1,2])
    C0034394 (UMLS CUI [1,3])
    C2964552 (UMLS CUI [1,4])
    C0037822 (UMLS CUI [2])
    Cleft-Q Speech Function, total score
    Item
    Cleft-Q Speech Function, total score
    integer
    C4321245 (UMLS CUI [1,1])
    C0008925 (UMLS CUI [1,2])
    C0034394 (UMLS CUI [1,3])
    C2964552 (UMLS CUI [1,4])
    C0037817 (UMLS CUI [2,1])
    C0542341 (UMLS CUI [2,2])
    Item Group
    Mastication and Occlusion
    C0024888 (UMLS CUI-1)
    C0011382 (UMLS CUI-2)
    Cleft-Q Eating and Drinking, total score
    Item
    Cleft-Q Eating and Drinking, total score
    integer
    C4321245 (UMLS CUI [1,1])
    C0008925 (UMLS CUI [1,2])
    C0034394 (UMLS CUI [1,3])
    C2964552 (UMLS CUI [1,4])
    C0013470 (UMLS CUI [2,1])
    C0684271 (UMLS CUI [2,2])
    Item Group
    Oral health
    C0029162 (UMLS CUI-1)
    Item
    Choose the answer the best describes you in the past 3 months regarding your teeth, mouth, or face. 1. Have you had pain in your teeth (toothache)?
    integer
    C0034394 (UMLS CUI [1,1])
    C2013427 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0040460 (UMLS CUI [2])
    Question 1 of COHIP OSS
    Code List
    Choose the answer the best describes you in the past 3 months regarding your teeth, mouth, or face. 1. Have you had pain in your teeth (toothache)?
    CL Item
    Never  (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost never (1)
    C2986940 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Fairly often (3)
    C2986941 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost all of the time (4)
    C3844113 (UMLS CUI-1)
    (Comment:en)
    Item
    2. Have you had discolored teeth or spots on your teeth?
    integer
    C0034394 (UMLS CUI [1,1])
    C2013427 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0040434 (UMLS CUI [2])
    Question 1 of COHIP OSS
    Code List
    2. Have you had discolored teeth or spots on your teeth?
    CL Item
    Never  (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost never (1)
    C2986940 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Fairly often (3)
    C2986941 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost all of the time (4)
    C3844113 (UMLS CUI-1)
    (Comment:en)
    Item
    3. Have you had crooked teeth or spaces between your teeth?
    integer
    C0034394 (UMLS CUI [1,1])
    C2013427 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C1852504 (UMLS CUI [2])
    Question 1 of COHIP OSS
    Code List
    3. Have you had crooked teeth or spaces between your teeth?
    CL Item
    Never  (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost never (1)
    C2986940 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Fairly often (3)
    C2986941 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost all of the time (4)
    C3844113 (UMLS CUI-1)
    (Comment:en)
    Item
    4. Have you had bad breath?
    integer
    C0034394 (UMLS CUI [1,1])
    C2013427 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0018520 (UMLS CUI [2])
    Question 1 of COHIP OSS
    Code List
    4. Have you had bad breath?
    CL Item
    Never  (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost never (1)
    C2986940 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Fairly often (3)
    C2986941 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost all of the time (4)
    C3844113 (UMLS CUI-1)
    (Comment:en)
    Item
    5. Have you had bleeding gums?
    integer
    C0034394 (UMLS CUI [1,1])
    C2013427 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0017565 (UMLS CUI [2])
    Question 1 of COHIP OSS
    Code List
    5. Have you had bleeding gums?
    CL Item
    Never  (0)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost never (1)
    C2986940 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes (2)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Fairly often (3)
    C2986941 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Almost all of the time (4)
    C3844113 (UMLS CUI-1)
    (Comment:en)
    Item Group
    Appearance
    C0700364 (UMLS CUI-1)
    Item
    The following questions are also related to appearance, but in more detail. We would like you to answer by giving a score from 1 to 5, using the scale below. Section A: We've marked out 9 key areas of a 'normal' ear below. We'd like you to find them on your reconstructed ear and give them a score using the scale above. 1) Helical rim
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0229304 (UMLS CUI [2,1])
    C4554553 (UMLS CUI [2,2])
    Question 1 of Ear HrQoL
    Code List
    The following questions are also related to appearance, but in more detail. We would like you to answer by giving a score from 1 to 5, using the scale below. Section A: We've marked out 9 key areas of a 'normal' ear below. We'd like you to find them on your reconstructed ear and give them a score using the scale above. 1) Helical rim
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    2) Scaphoid fossa
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0458629 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    2) Scaphoid fossa
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    3) Conchal bowl
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0229316 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    3) Conchal bowl
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    4) Anti-tragus
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0229314 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    4) Anti-tragus
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    5) Triangular fossa
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0931624 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    5) Triangular fossa
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    6) Anti-helix
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0229308 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    6) Anti-helix
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    7) Tragus
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C1000996 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    7) Tragus
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    8) Incisura
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0229313 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    8) Incisura
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    9) Lobe
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0229315 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    9) Lobe
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    Section B: How satisfied are you with the following (again please use the scale above): 10) The size of your ear? (Big or small)
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0013443 (UMLS CUI [2,1])
    C0456389 (UMLS CUI [2,2])
    Question 1 of Ear HrQoL
    Code List
    Section B: How satisfied are you with the following (again please use the scale above): 10) The size of your ear? (Big or small)
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    11) The projection of your ear? (How much it sticks out)
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0849820 (UMLS CUI [2])
    Question 1 of Ear HrQoL
    Code List
    11) The projection of your ear? (How much it sticks out)
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    12) The position of your ear? (Too high or low; see Picture I)                    
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0013443 (UMLS CUI [2,1])
    C0733755 (UMLS CUI [2,2])
    Question 1 of Ear HrQoL
    Code List
    12) The position of your ear? (Too high or low; see Picture I)                    
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    13) The rotation of your ear? (How much your ear tilts)                  
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0013443 (UMLS CUI [1,4])
    C0035868 (UMLS CUI [1,5])
    Question 1 of Ear HrQoL
    Code List
    13) The rotation of your ear? (How much your ear tilts)                  
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    14) The skin covering your ear? (quality, colour, hair)
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C1123023 (UMLS CUI [2,1])
    C0013443 (UMLS CUI [2,2])
    C0332306 (UMLS CUI [2,3])
    C1123023 (UMLS CUI [3,1])
    C0013443 (UMLS CUI [3,2])
    C0009393 (UMLS CUI [3,3])
    C1123023 (UMLS CUI [4,1])
    C0013443 (UMLS CUI [4,2])
    C0018494 (UMLS CUI [4,3])
    Question 1 of Ear HrQoL
    Code List
    14) The skin covering your ear? (quality, colour, hair)
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Item
    15) The scars around your ear and scalp?
    integer
    C0013443 (UMLS CUI [1,1])
    C4279947 (UMLS CUI [1,2])
    C0681889 (UMLS CUI [1,3])
    C0241158 (UMLS CUI [2,1])
    C0013443 (UMLS CUI [2,2])
    C0241158 (UMLS CUI [3,1])
    C0036270 (UMLS CUI [3,2])
    Question 1 of Ear HrQoL
    Code List
    15) The scars around your ear and scalp?
    CL Item
    Very dissatisfied (1)
    C3843339 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite dissatisfied  (2)
    C2984080 (UMLS CUI-1)
    C4085546 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Alright (3)
    C3843337 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Quite satisfied (4)
    C2984080 (UMLS CUI-1)
    C4084799 (UMLS CUI-2)
    (Comment:en)
    CL Item
    Very satisfied (5)
    C3840671 (UMLS CUI-1)
    (Comment:en)
    Cleft-Q Appearance of the Face, total score
    Item
    Cleft-Q Appearance of the Face, total score
    integer
    C4321245 (UMLS CUI [1,1])
    C0008925 (UMLS CUI [1,2])
    C0034394 (UMLS CUI [1,3])
    C2964552 (UMLS CUI [1,4])
    C0700364 (UMLS CUI [2,1])
    C0015450 (UMLS CUI [2,2])
    Cleft-Q Appearance of the Jaws, total score
    Item
    Cleft-Q Appearance of the Jaws, total score
    integer
    C4321245 (UMLS CUI [1,1])
    C0008925 (UMLS CUI [1,2])
    C0034394 (UMLS CUI [1,3])
    C2964552 (UMLS CUI [1,4])
    C0700364 (UMLS CUI [2,1])
    C0022359 (UMLS CUI [2,2])
    Cleft-Q Appearance of the Teeth, total score
    Item
    Cleft-Q Appearance of the Teeth, total score
    integer
    C4321245 (UMLS CUI [1,1])
    C0008925 (UMLS CUI [1,2])
    C0034394 (UMLS CUI [1,3])
    C2964552 (UMLS CUI [1,4])
    C0700364 (UMLS CUI [2,1])
    C0040426 (UMLS CUI [2,2])
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