ID

40690

Description

ICHOM Craniofacial Microsomia data collection Version 1.0.4 April 18th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Craniofacial Microsomia, the following conditions and treatment approaches (or interventions) are covered by our Standard Set: Conditions*: Patient population defined as: 2 major criteria or 1 major + 1 minor criteria or 3+ minor criteria Major criteria: Mandibular hypoplasia | Microtia | Orbital/facial bone hypoplasia Assymetric facial movement Minor criteria: Facial soft tissue deficiency | Pre-auricular tags | Macrostomia | Clefting Epibulbar dermoids | Hemivertabrae Treatment Approaches: Plastic Surgery | Maxillofacial Surgery | Dentistry and Orthodontics | Otolaryngology |Ophthalmology | Pediatrics | Speech and Language | Psychology/Psychiatry | Nursing | Feeding/Nutrition | Audiology | Social Care | * Excluded diagnoses: Mandibulofacial dysostosis with microcephaly, Townes-Brocks Syndrome, Treacher Collins Syndrome, Auriculocondylar Syndrome, Bixler Syndrome, Branchiootorenal (BOR) Syndrome, CHARGE Syndrome, Miller Syndrome, Nager Syndrome, Oculoauriculofrontonasal Syndrome, Parry Rhomborg, Branchiooculofacial Syndromes (BOFS), isolated typical Tessier clefting (with no associated facial hypoplasia). This document contains the 22 years old patient - Parent-reported Form. It has to be filled in when the patient is 22 years old. 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. 11/19/19 11/19/19 -
  2. 11/23/19 11/23/19 -
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
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

22 years old patient - Parent-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
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 your son or daughter has had to deal with. Please read each problem and think if this has happened to them in the last year. Tick the box that says how often it has happened. 1. Having difficulty being accepted as a friend by others their 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0683547
2. Not being invited to do things with others their 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0683547
UMLS CUI [2,3]
C2826348
3. Worrying that they will have trouble finding a boyfriend or 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C3169394
UMLS CUI [2,3]
C0439849
4.Being asked questions by people about their 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0376634
UMLS CUI [2,3]
C1522634
UMLS CUI [2,4]
C0027361
5. Having people make comments about their 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C3482948
UMLS CUI [2,3]
C0376634
6. Being stared at by people they 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0871443
UMLS CUI [2,3]
C0423086
7. Being teased because of their 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C4330906
UMLS CUI [2,3]
C0376634
8. Having problems with their 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0580094
9. Not being able to do things as well as others their 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C1298908
UMLS CUI [2,3]
C3259648
UMLS CUI [2,4]
C0030767
10. People having trouble understanding what they 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C1546466
UMLS CUI [2,3]
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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0033213
UMLS CUI [2,3]
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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0033213
UMLS CUI [2,3]
C0015672
14. Having trouble finding a doctor or dentist to help their treatment who is close to where you 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0033213
UMLS CUI [2,3]
C0031831
UMLS CUI [2,4]
C1706276
UMLS CUI [2,5]
C0237096
UMLS CUI [3,1]
C0008059
UMLS CUI [3,2]
C0033213
UMLS CUI [3,3]
C0011441
UMLS CUI [3,4]
C1706276
UMLS CUI [3,5]
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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C4330694
16.Not wanting to have treatment that their doctors want them to have
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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0040809
17. Having an operation which they were 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0543467
UMLS CUI [2,3]
C0233481
18. Not liking the way they 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C3274925
19. Thinking about why they 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0039869
UMLS CUI [2,3]
C0376634
UMLS CUI [2,4]
C0566251
20. Trying to wear their clothes or hair or holding their head so you can’t notice their 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]
C0085537
UMLS CUI [1,4]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C4062112
UMLS CUI [2,3]
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 the craniofacial condition has made their 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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0085732
UMLS CUI [2,3]
C0085978
UMLS CUI [2,4]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C2700214
UMLS CUI [2,3]
C0439093
UMLS CUI [2,4]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C2984051
UMLS CUI [2,3]
C0439093
UMLS CUI [2,4]
C0030767
4. Being more independent than other young people their 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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0085862
UMLS CUI [2,3]
C0439093
UMLS CUI [2,4]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0582778
UMLS CUI [2,3]
C0018576
UMLS CUI [2,4]
C0439093
UMLS CUI [2,5]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C2700214
UMLS CUI [2,3]
C0027361
UMLS CUI [2,4]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C1527305
UMLS CUI [2,3]
C3810854
UMLS CUI [2,4]
C0681169
UMLS CUI [2,5]
C0439093
UMLS CUI [2,6]
C0030767
8. Getting help with their 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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0518076
UMLS CUI [2,3]
C1269765
9. Getting support from their 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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C1521721
UMLS CUI [2,3]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0556656
UMLS CUI [2,3]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C2828361
UMLS CUI [2,3]
C0205555
UMLS CUI [2,4]
C3843676
UMLS CUI [2,5]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0205555
UMLS CUI [2,3]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0205172
UMLS CUI [2,3]
C0004268
14. Their family getting closer because of their 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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0205172
UMLS CUI [2,3]
C3810854
UMLS CUI [2,4]
C0015576
UMLS CUI [2,5]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0018896
UMLS CUI [2,3]
C0027361
UMLS CUI [2,4]
C0205172
UMLS CUI [2,5]
C0004448
UMLS CUI [2,6]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0018896
UMLS CUI [2,3]
C0027361
UMLS CUI [2,4]
C0439849
UMLS CUI [2,5]
C0027361
UMLS CUI [2,6]
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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0332219
UMLS CUI [2,3]
C0516939
UMLS CUI [2,4]
C0439093
UMLS CUI [2,5]
C0030767
18. Having more really strong friendships than others their 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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0442821
UMLS CUI [2,3]
C0178647
UMLS CUI [2,4]
C0439093
UMLS CUI [2,5]
C0030767
19. Feeling good ‘cos they know that the doctors are keeping a close eye on them 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]
C0597530
UMLS CUI [1,5]
C0034394
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0237935
UMLS CUI [2,3]
C0031831
Airway and Breathing
Description

Airway and Breathing

Alias
UMLS CUI-1
C0458827
UMLS CUI-2
C0035203
Does your child presently require a tracheostomy?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0521116
UMLS CUI [1,3]
C1514873
UMLS CUI [1,4]
C0040590
Does your child presently require a prong (nasopharyngeal airway)?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0521116
UMLS CUI [1,3]
C1514873
UMLS CUI [1,4]
C0150683
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Similar models

22 years old patient - Parent-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
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 your son or daughter has had to deal with. Please read each problem and think if this has happened to them in the last year. Tick the box that says how often it has happened. 1. Having difficulty being accepted as a friend by others their age
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (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 your son or daughter has had to deal with. Please read each problem and think if this has happened to them in the last year. Tick the box that says how often it has happened. 1. Having difficulty being accepted as a friend by others their 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 their age
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0683547 (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 their 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 they will have trouble finding a boyfriend or girlfriend
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C3169394 (UMLS CUI [2,2])
C0439849 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
3. Worrying that they will have trouble finding a boyfriend or 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 their craniofacial condition
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0376634 (UMLS CUI [2,2])
C1522634 (UMLS CUI [2,3])
C0027361 (UMLS CUI [2,4])
Question 1 of CFEQ_YA Stressor
Code List
4.Being asked questions by people about their 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 their craniofacial condition
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C3482948 (UMLS CUI [2,2])
C0376634 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
5. Having people make comments about their 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 they don’t know
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0871443 (UMLS CUI [2,2])
C0423086 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
6. Being stared at by people they 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 their craniofacial condition
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C4330906 (UMLS CUI [2,2])
C0376634 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
7. Being teased because of their 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 their school work
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0580094 (UMLS CUI [2,2])
Question 1 of CFEQ_YA Stressor
Code List
8. Having problems with their 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 their age
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C1298908 (UMLS CUI [2,2])
C3259648 (UMLS CUI [2,3])
C0030767 (UMLS CUI [2,4])
Question 1 of CFEQ_YA Stressor
Code List
9. Not being able to do things as well as others their 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 they say
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C3166351 (UMLS CUI [2,2])
Question 1 of CFEQ_YA Stressor
Code List
10. People having trouble understanding what they 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])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C1546466 (UMLS CUI [2,2])
C0038039 (UMLS CUI [2,3])
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])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0033213 (UMLS CUI [2,2])
C0030193 (UMLS CUI [2,3])
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])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0033213 (UMLS CUI [2,2])
C0015672 (UMLS CUI [2,3])
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 their treatment who is close to where you live
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0033213 (UMLS CUI [2,2])
C0031831 (UMLS CUI [2,3])
C1706276 (UMLS CUI [2,4])
C0237096 (UMLS CUI [2,5])
C0008059 (UMLS CUI [3,1])
C0033213 (UMLS CUI [3,2])
C0011441 (UMLS CUI [3,3])
C1706276 (UMLS CUI [3,4])
C0237096 (UMLS CUI [3,5])
Question 1 of CFEQ_YA Stressor
Code List
14. Having trouble finding a doctor or dentist to help their treatment who is close to where you 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])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C4330694 (UMLS CUI [2,2])
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 their doctors want them to have
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0040809 (UMLS CUI [2,2])
Question 1 of CFEQ_YA Stressor
Code List
16.Not wanting to have treatment that their doctors want them 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 they were worried or stressed about
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0543467 (UMLS CUI [2,2])
C0233481 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
17. Having an operation which they were 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 they look
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C3274925 (UMLS CUI [2,2])
Question 1 of CFEQ_YA Stressor
Code List
18. Not liking the way they 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 they have a craniofacial condition
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0039869 (UMLS CUI [2,2])
C0376634 (UMLS CUI [2,3])
C0566251 (UMLS CUI [2,4])
Question 1 of CFEQ_YA Stressor
Code List
19. Thinking about why they 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 their clothes or hair or holding their head so you can’t notice their craniofacial condition
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C4062112 (UMLS CUI [2,2])
C0376634 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
20. Trying to wear their clothes or hair or holding their head so you can’t notice their 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 the craniofacial condition has made their body
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0085732 (UMLS CUI [2,2])
C0085978 (UMLS CUI [2,3])
C0376634 (UMLS CUI [2,4])
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 the craniofacial condition has made their 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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C2700214 (UMLS CUI [2,2])
C0439093 (UMLS CUI [2,3])
C0030767 (UMLS CUI [2,4])
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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C2984051 (UMLS CUI [2,2])
C0439093 (UMLS CUI [2,3])
C0030767 (UMLS CUI [2,4])
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 their age
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0085862 (UMLS CUI [2,2])
C0439093 (UMLS CUI [2,3])
C0030767 (UMLS CUI [2,4])
Question 1 of CFEQ_YA Stressor
Code List
4. Being more independent than other young people their 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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0582778 (UMLS CUI [2,2])
C0018576 (UMLS CUI [2,3])
C0439093 (UMLS CUI [2,4])
C0205394 (UMLS CUI [2,5])
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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C2700214 (UMLS CUI [2,2])
C0027361 (UMLS CUI [2,3])
C1705242 (UMLS CUI [2,4])
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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (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 (UMLS CUI [2,6])
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 their school work
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0518076 (UMLS CUI [2,2])
C1269765 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
8. Getting help with their 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 their doctors and other people in the hospital
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C1521721 (UMLS CUI [2,2])
C0018724 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
9. Getting support from their 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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0556656 (UMLS CUI [2,2])
C1549598 (UMLS CUI [2,3])
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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C2828361 (UMLS CUI [2,2])
C0205555 (UMLS CUI [2,3])
C3843676 (UMLS CUI [2,4])
C0018576 (UMLS CUI [2,5])
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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0205555 (UMLS CUI [2,2])
C1136188 (UMLS CUI [2,3])
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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0205172 (UMLS CUI [2,2])
C0004268 (UMLS CUI [2,3])
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. Their family getting closer because of their craniofacial condition
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0205172 (UMLS CUI [2,2])
C3810854 (UMLS CUI [2,3])
C0015576 (UMLS CUI [2,4])
C0376634 (UMLS CUI [2,5])
Question 1 of CFEQ_YA Stressor
Code List
14. Their family getting closer because of their 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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (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 (UMLS CUI [2,6])
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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (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 (UMLS CUI [2,6])
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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0332219 (UMLS CUI [2,2])
C0516939 (UMLS CUI [2,3])
C0439093 (UMLS CUI [2,4])
C0030767 (UMLS CUI [2,5])
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 their age
integer
C0376634 (UMLS CUI [1,1])
C0596545 (UMLS CUI [1,2])
C1446409 (UMLS CUI [1,3])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0442821 (UMLS CUI [2,2])
C0178647 (UMLS CUI [2,3])
C0439093 (UMLS CUI [2,4])
C0030767 (UMLS CUI [2,5])
Question 1 of CFEQ_YA Stressor
Code List
18. Having more really strong friendships than others their 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 they know that the doctors are keeping a close eye on them 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])
C0597530 (UMLS CUI [1,4])
C0034394 (UMLS CUI [1,5])
C0008059 (UMLS CUI [2,1])
C0237935 (UMLS CUI [2,2])
C0031831 (UMLS CUI [2,3])
Question 1 of CFEQ_YA Stressor
Code List
19. Feeling good ‘cos they know that the doctors are keeping a close eye on them 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
Airway and Breathing
C0458827 (UMLS CUI-1)
C0035203 (UMLS CUI-2)
Item
Does your child presently require a tracheostomy?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0040590 (UMLS CUI [1,4])
Tracheostomy
Code List
Does your child presently require a tracheostomy?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child presently require a prong (nasopharyngeal airway)?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0150683 (UMLS CUI [1,4])
Tracheostomy
Code List
Does your child presently require a prong (nasopharyngeal airway)?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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