ID

38830

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/ 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 2 years Clinical Form. It has to be filled in when the patient is 2 years old. Collecting Patient-Reported Outcome Measures: Cleft Q - Patient/parent. As there is a 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 included 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 will be 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.

Link

http://www.ichom.org/

Keywords

Versions (3)
  1. 11/7/19 11/7/19 -
  2. 11/18/19 11/18/19 -
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

November 7, 2019

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License

Creative Commons BY-NC 3.0
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ICHOM Craniofacial Microsomia

English

2 years Clinical Form

1 forms  
  1. StudyEvent: ODM
    1. 2 years Clinical Form
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
Patient characteristics
Description

Patient characteristics

Alias
UMLS CUI-1
C0815172
Indicate the patient's age at first encounter with team
Description

Supporting Definition: Recorded in months at 24 months and younger. Recorded in years if older than 24 months Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Numerical value Response option: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C1514821
Indicate the patient’s sex at birth
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is the ethnicity of subject?
Description

Note: A codelist is not supplemented because it varies by country and should be determined by country (not for cross-country comparison) Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Single answer

Data type

text

Alias
UMLS CUI [1]
C0034510
UMLS CUI [2]
C0015031
Is the patient affected bilaterally?
Description

Supporting Definition:Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0432131
Please calculate Asymmetry score?
Description

Supporting Definition:Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: All time points Reporting Source: Clinician-reported Type: Numerical value Response option: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0376634
UMLS CUI [1,3]
C0332514
Please calculate severity score:
Description

Supporting Definition: Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Numerical value Response option: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0376634
UMLS CUI [1,3]
C0439793
Please indicate extracranial features per system: 1 = Cardiac
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0018787
Please indicate extracranial features per system: 2 = Renal
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0022646
Please indicate extracranial features per system: 3 = Nervous system
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0027763
Please indicate extracranial features per system: 4 = Digestive
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0012240
Please indicate extracranial features per system: 5 = Skeletal
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0037253
Please indicate extracranial features per system: 6 = Respiratory
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0035237
Indicate if the patient has a genetically confirmed mutation, known to be associated with craniofacial microsomia?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0596612
UMLS CUI [1,2]
C0376634
Indicate which mutation:
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer Response option: Free text

Data type

text

Alias
UMLS CUI [1,1]
C0376634
UMLS CUI [1,2]
C0026882
Family characteristics and community environment
Description

Family characteristics and community environment

Alias
UMLS CUI-1
C1521970
UMLS CUI-2
C0015576
UMLS CUI-3
C0563116
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030551
UMLS CUI [1,2]
C0013658
Geographic location where the patient resides, specified by country and country specific postal code.
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Alphanumeric value Response option: Alphanumeric entry

Data type

text

Alias
UMLS CUI [1,1]
C0454664
UMLS CUI [1,2]
C0237096
UMLS CUI [1,3]
C0421454
Specify the distance in km from treatment team
Description

Supporting Definition: Calculated from residence and hospital location Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Numerical value Response option: Numerical value of distance in km

Data type

float

Measurement units
  • km
Alias
UMLS CUI [1,1]
C0012751
UMLS CUI [1,2]
C0019994
UMLS CUI [1,3]
C0237096
km
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C1518988
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C4696991
Indicate if the patient has been transferred to your institution after care was begun elsewhere
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0184681
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0439787
Hearing
Description

Hearing

Alias
UMLS CUI-1
C0018767
Does the patient need a hearing aid?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Clinician-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0018768
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Similar models

2 years Clinical Form

1 forms
  1. StudyEvent: ODM
    1. 2 years Clinical Form
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
Patient characteristics
C0815172 (UMLS CUI-1)
Age at first encounter with team
Item
Indicate the patient's age at first encounter with team
integer
C0001779 (UMLS CUI [1,1])
C1514821 (UMLS CUI [1,2])
Item
Indicate the patient’s sex at birth
integer
C0079399 (UMLS CUI [1])
Sex
Code List
Indicate the patient’s sex at birth
CL Item
Male (1)
C1706180 (UMLS CUI-1)
(Comment:en)
CL Item
Female (2)
C0086287 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Race/ethnicity
Item
What is the ethnicity of subject?
text
C0034510 (UMLS CUI [1])
C0015031 (UMLS CUI [2])
Item
Is the patient affected bilaterally?
integer
C0031437 (UMLS CUI [1,1])
C0432131 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Is the patient affected bilaterally?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Phenotype: Asymmetry
Item
Please calculate Asymmetry score?
integer
C0031437 (UMLS CUI [1,1])
C0376634 (UMLS CUI [1,2])
C0332514 (UMLS CUI [1,3])
Phenotype: Severity
Item
Please calculate severity score:
integer
C0031437 (UMLS CUI [1,1])
C0376634 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
Extracranial features: Cardiac
Item
Please indicate extracranial features per system: 1 = Cardiac
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0018787 (UMLS CUI [1,4])
Extracranial features: Renal
Item
Please indicate extracranial features per system: 2 = Renal
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0022646 (UMLS CUI [1,4])
Extracranial features: Nervous system
Item
Please indicate extracranial features per system: 3 = Nervous system
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0027763 (UMLS CUI [1,4])
Extracranial features: Digestive
Item
Please indicate extracranial features per system: 4 = Digestive
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0012240 (UMLS CUI [1,4])
Extracranial features: Skeletal
Item
Please indicate extracranial features per system: 5 = Skeletal
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0037253 (UMLS CUI [1,4])
Extracranial features: Respiratory
Item
Please indicate extracranial features per system: 6 = Respiratory
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0035237 (UMLS CUI [1,4])
Item
Indicate if the patient has a genetically confirmed mutation, known to be associated with craniofacial microsomia?
integer
C0596612 (UMLS CUI [1,1])
C0376634 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if the patient has a genetically confirmed mutation, known to be associated with craniofacial microsomia?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Syndrome/genetic mutation
Item
Indicate which mutation:
text
C0376634 (UMLS CUI [1,1])
C0026882 (UMLS CUI [1,2])
Item Group
Family characteristics and community environment
C1521970 (UMLS CUI-1)
C0015576 (UMLS CUI-2)
C0563116 (UMLS CUI-3)
Item
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
integer
C0030551 (UMLS CUI [1,1])
C0013658 (UMLS CUI [1,2])
Parent education
Code List
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
CL Item
None (0)
C0557286 (UMLS CUI-1)
(Comment:en)
CL Item
Primary (1)
C0013658 (UMLS CUI-1)
C0033145 (UMLS CUI-2)
(Comment:en)
CL Item
Secondary  (2)
C0557289 (UMLS CUI-1)
(Comment:en)
CL Item
Tertiary (3)
C0557291 (UMLS CUI-1)
(Comment:en)
Residence
Item
Geographic location where the patient resides, specified by country and country specific postal code.
text
C0454664 (UMLS CUI [1,1])
C0237096 (UMLS CUI [1,2])
C0421454 (UMLS CUI [1,3])
Distance from treatment team
Item
Specify the distance in km from treatment team
float
C0012751 (UMLS CUI [1,1])
C0019994 (UMLS CUI [1,2])
C0237096 (UMLS CUI [1,3])
Item
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
integer
C1302313 (UMLS CUI [1,1])
C1518988 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
integer
C1302313 (UMLS CUI [1,1])
C4696991 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred to your institution after care was begun elsewhere
integer
C0030704 (UMLS CUI [1,1])
C0184681 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if the patient has been transferred to your institution after care was begun elsewhere
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
integer
C0030704 (UMLS CUI [1,1])
C0439787 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item Group
Hearing
C0018767 (UMLS CUI-1)
Item
Does the patient need a hearing aid?
integer
C0018768 (UMLS CUI [1])
Hearing aid
Code List
Does the patient need a hearing aid?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes, right (1)
C1705108 (UMLS CUI-1)
C0205090 (UMLS CUI-2)
(Comment:en)
CL Item
Yes, left (2)
C1705108 (UMLS CUI-1)
C0205091 (UMLS CUI-2)
(Comment:en)
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