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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