ID

40692

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 8 years old Patient-reported Form. It has to be filled in when the patient is 8 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 (3)
  1. 11/23/19 11/23/19 -
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
  3. 9/20/21 9/20/21 -
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

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License

Creative Commons BY-NC 4.0
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ICHOM Craniofacial Microsomia

English

8 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]
C2964552
UMLS CUI [2,1]
C0728831
UMLS CUI [2,2]
C0542341
Airway and Breathing
Description

Airway and Breathing

Alias
UMLS CUI-1
C0458827
UMLS CUI-2
C0035203
Pediatric Sleep Questionnaire, total score
Description

As a license agreement is needed for use of this questionnaire, the actual 22 questions are not included in this version of the standard set. Instead you can note the total score. ICHOM OID's are: PSQ_Q01 to PSQ_Q22 Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 8, 12 years Reporting source: Patient/parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0037313
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
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
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
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]
C4068922
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 [2,1]
C0013443
UMLS CUI [2,2]
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 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

8 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])
C2964552 (UMLS CUI [1,4])
C0728831 (UMLS CUI [2,1])
C0542341 (UMLS CUI [2,2])
Item Group
Airway and Breathing
C0458827 (UMLS CUI-1)
C0035203 (UMLS CUI-2)
Pediatric Sleep Questionnaire, total score
Item
Pediatric Sleep Questionnaire, total score
integer
C1521725 (UMLS CUI [1,1])
C0037313 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
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
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
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])
C4068922 (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 [2,1])
C0035868 (UMLS CUI [2,2])
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 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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