ID

39060

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 old patient - Parent-reported 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 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.

Link

http://www.ichom.org/

Keywords

  1. 11/23/19 11/23/19 -
  2. 11/26/19 11/26/19 - Sarah Riepenhausen
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

November 26, 2019

DOI

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License

Creative Commons BY-NC 3.0

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ICHOM Craniofacial Microsomia

2 years old patient - Parent-reported

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
Family Stress
Description

Family Stress

Alias
UMLS CUI-1
C0015576
UMLS CUI-2
C0038435
Distress Thermometer Questionnaire
Description

As the source of the distress thermometer questions are not sure, the actual 50 questions are not part of this version of the standard set. ICHOM OID's are: DT-P_Q01 to DT-P_Q50. Inclusion criteria: Parents of patients with craniofacial microsomia Timing: 2, 5, 8, 12 years Reporting Source: Parent-reported Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0231303
UMLS CUI [1,2]
C0034394
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]
C0750528
UMLS CUI [1,4]
C1514873
UMLS CUI [1,5]
C0150683
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 [1,1]
C0407713
UMLS CUI [1,2]
C0008059
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
UMLS CUI [1,3]
C0008059
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
UMLS CUI [1,3]
C0008059
Feeding and Swallowing
Description

Feeding and Swallowing

Alias
UMLS CUI-1
C2987508
UMLS CUI-2
C0011167
Does your child presently require a nasogastric feeding tube?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 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]
C0192456
Has your child required a surgically placed feeding tube?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 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]
C0041281
UMLS CUI [1,5]
C0543467
Does your child presently require their liquids/food to be thickened to be safe to swallow?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 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]
C0302908
UMLS CUI [1,5]
C0205400
UMLS CUI [1,6]
C0589275
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0521116
UMLS CUI [2,3]
C1514873
UMLS CUI [2,4]
C0016452
UMLS CUI [2,5]
C0205400
UMLS CUI [2,6]
C0589275
Does the patient regularly aspirate their food/feeds?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0449581
UMLS CUI [1,3]
C0232071
Hearing
Description

Hearing

Alias
UMLS CUI-1
C0018767
How many times has your child had an ear infection (otitis media) in the last 12 months?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Patient/parent-reported Type: Numerical value; Integer (≥0) Response option: Free text

Data type

text

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0029882
UMLS CUI [1,3]
C0750480
UMLS CUI [1,4]
C4086728
Vision
Description

Vision

Alias
UMLS CUI-1
C0042789
Does your child have difficulty with their vision?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C3665347
Does your child require ointment to protect their eyes?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C1514873
UMLS CUI [1,3]
C0028912
UMLS CUI [1,4]
C0455242
Has your child required surgery on their eyes?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C1514873
UMLS CUI [1,3]
C0038901

Similar models

2 years old patient - Parent-reported

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
Family Stress
C0015576 (UMLS CUI-1)
C0038435 (UMLS CUI-2)
Distress Thermometer Questionnaire
Item
Distress Thermometer Questionnaire
text
C0231303 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
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])
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])
C0750528 (UMLS CUI [1,3])
C1514873 (UMLS CUI [1,4])
C0150683 (UMLS CUI [1,5])
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)
Item
Has your child/have you required surgery on their/your jaw for their/your airway?
integer
C0407713 (UMLS CUI [1,1])
C0008059 (UMLS CUI [1,2])
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])
C0008059 (UMLS CUI [1,3])
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])
C0008059 (UMLS CUI [1,3])
Code List
Has the patient had surgery for the airway?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item Group
Feeding and Swallowing
C2987508 (UMLS CUI-1)
C0011167 (UMLS CUI-2)
Item
Does your child presently require a nasogastric feeding tube?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0192456 (UMLS CUI [1,4])
Code List
Does your child presently require a nasogastric feeding tube?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has your child required a surgically placed feeding tube?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0041281 (UMLS CUI [1,4])
C0543467 (UMLS CUI [1,5])
Code List
Has your child required a surgically placed feeding tube?
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 their liquids/food to be thickened to be safe to swallow?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0302908 (UMLS CUI [1,4])
C0205400 (UMLS CUI [1,5])
C0589275 (UMLS CUI [1,6])
C0008059 (UMLS CUI [2,1])
C0521116 (UMLS CUI [2,2])
C1514873 (UMLS CUI [2,3])
C0016452 (UMLS CUI [2,4])
C0205400 (UMLS CUI [2,5])
C0589275 (UMLS CUI [2,6])
Code List
Does your child presently require their liquids/food to be thickened to be safe to swallow?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does the patient regularly aspirate their food/feeds?
integer
C0008059 (UMLS CUI [1,1])
C0449581 (UMLS CUI [1,2])
C0232071 (UMLS CUI [1,3])
Code List
Does the patient regularly aspirate their food/feeds?
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)
Otitis media
Item
How many times has your child had an ear infection (otitis media) in the last 12 months?
text
C0008059 (UMLS CUI [1,1])
C0029882 (UMLS CUI [1,2])
C0750480 (UMLS CUI [1,3])
C4086728 (UMLS CUI [1,4])
Item Group
Vision
C0042789 (UMLS CUI-1)
Item
Does your child have difficulty with their vision?
integer
C0008059 (UMLS CUI [1,1])
C3665347 (UMLS CUI [1,2])
Code List
Does your child have difficulty with their vision?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child require ointment to protect their eyes?
integer
C0008059 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0028912 (UMLS CUI [1,3])
C0455242 (UMLS CUI [1,4])
Code List
Does your child require ointment to protect their eyes?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has your child required surgery on their eyes?
integer
C0008059 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0038901 (UMLS CUI [1,3])
Code List
Has your child required surgery on their eyes?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)

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