ID

39124

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 complication post-intervention Form. It has to be filled in 30 days and 6 months post-intervention. 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

  1. 11/23/19 11/23/19 -
  2. 11/26/19 11/26/19 - Sarah Riepenhausen
  3. 12/3/19 12/3/19 - Sarah Riepenhausen
  4. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

December 3, 2019

DOI

To request one please log in.

License

Creative Commons BY-NC 3.0

Model comments :

You can comment on the data model here. Via the speech bubbles at the itemgroups and items you can add comments to those specificially.

Itemgroup comments for :

Item comments for :

In order to download data models you must be logged in. Please log in or register for free.

ICHOM Craniofacial Microsomia

Complications post-intervention

Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
Description

Supporting Definition: 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 Type: Numerical Response Option: According to institution

Data type

integer

Alias
UMLS CUI [1]
C1269815
Time relative to intervention
Description

Note: this item does not exist in the original form. As this form has to be filled in 30 days and 6 months post intervention, please tick for which time you'll fill in this form.

Data type

integer

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C0184661
Patient characteristics
Description

Patient characteristics

Alias
UMLS CUI-1
C0815172
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]
C0332514
UMLS CUI [1,2]
C0432131
Burden of care
Description

Burden of care

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C2828008
Indicate if the patient experienced any of the following complications: 0 = None
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0032787
UMLS CUI [1,2]
C0549184
Indicate if the patient experienced any of the following complications: 1 = Bleeding requiring unexpected return
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C0019080
UMLS CUI [2,2]
C1514873
UMLS CUI [2,3]
C4055646
UMLS CUI [2,4]
C0332156
UMLS CUI [2,5]
C0029064
Indicate if the patient experienced any of the following complications: 2 = Bleeding requiring unexpected transfusion
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C0019080
UMLS CUI [2,2]
C1514873
UMLS CUI [2,3]
C4055646
UMLS CUI [2,4]
C1879316
Indicate if the patient experienced any of the following complications: 3 = Infection: abscess
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2]
C0000833
Indicate if the patient experienced any of the following complications: 4 = Infection: graft material
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C0181074
UMLS CUI [2,2]
C3714514
Indicate if the patient experienced any of the following complications: 5 = Loss of vision
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2]
C0730512
Indicate if the patient experienced any of the following complications: 6 = Loss of globe
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C1517945
UMLS CUI [2,2]
C0015392
Indicate if the patient experienced any of the following complications: 7 = Wound: flap necrosis
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C1096106
UMLS CUI [2,2]
C4075512
Indicate if the patient experienced any of the following complications: 8 = Iatrogenic injury to cornea/globe
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C0854404
UMLS CUI [2,2]
C0010031
UMLS CUI [3,1]
C0854404
UMLS CUI [3,2]
C0015392
Indicate if the patient experienced any of the following complications: 9 = Iatrogenic injury to nerve(s)
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C0854404
UMLS CUI [2,2]
C0027740
Indicate if the patient experienced any of the following complications: 10 = Iatrogenic injury to permanent teeth
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C0854404
UMLS CUI [2,2]
C0348070
Indicate if the patient experienced any of the following complications: 11 = Respiratory distress requiring mechanical ventilation
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C0476273
UMLS CUI [2,2]
C1514873
UMLS CUI [2,3]
C0199470
Indicate if the patient experienced any of the following complications: 12 = Ankylosis of mandible/temporomandibular joints
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C0003090
UMLS CUI [2,2]
C0039493
Indicate if the patient experienced any of the following complications: 13 = Hardware failure: dentofacial orthopaedics
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C4035912
UMLS CUI [2,2]
C4544520
UMLS CUI [2,3]
C0029355
Indicate if the patient experienced any of the following complications: 14 = Hardware failure (exposure of infection)
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2,1]
C4035912
UMLS CUI [2,2]
C0332157
UMLS CUI [2,3]
C3714514
Indicate if the patient experienced any of the following complications: 15 = Death
Description

Supporting Definition: Select all that apply Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1]
C0032787
UMLS CUI [2]
C0011065
If patient was hospitalized please indicate the date the patient first arrived
Description

Supporting Definition: Date used to calculate total length of stay and post-procedure length of stay Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Administrative data Type: Date by DD/MM/YYYY Response option: DD/MM/YYYY at arrival

Data type

date

Alias
UMLS CUI [1,1]
C0205435
UMLS CUI [1,2]
C3263562
UMLS CUI [1,3]
C0011008
Indicate the date the patient was discharged
Description

Supporting Definition: Date used to calculate total length of stay Inclusion criteria: Patients with craniofacial microsomia Timing: 30 days and 6 months post-operatively Reporting Source: Administrative data Type: Date by DD/MM/YYYY Response option: DD/MM/YYYY at discharge

Data type

date

Alias
UMLS CUI [1]
C2361123

Similar models

Complications post-intervention

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
Time relative to intervention
integer
C0439564 (UMLS CUI [1,1])
C0184661 (UMLS CUI [1,2])
Code List
Time relative to intervention
CL Item
30 days post-intervention (1)
CL Item
6 months post-intervention (2)
Item Group
Patient characteristics
C0815172 (UMLS CUI-1)
Phenotype: Asymmetry
Item
Please calculate Asymmetry score?
integer
C0332514 (UMLS CUI [1,1])
C0432131 (UMLS CUI [1,2])
Item Group
Burden of care
C0087111 (UMLS CUI-1)
C2828008 (UMLS CUI-2)
Post-operative complications: None
Item
Indicate if the patient experienced any of the following complications: 0 = None
boolean
C0032787 (UMLS CUI [1,1])
C0549184 (UMLS CUI [1,2])
Post-operative complications: Bleeding requiring unexpected return
Item
Indicate if the patient experienced any of the following complications: 1 = Bleeding requiring unexpected return
boolean
C0032787 (UMLS CUI [1])
C0019080 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C4055646 (UMLS CUI [2,3])
C0332156 (UMLS CUI [2,4])
C0029064 (UMLS CUI [2,5])
Post-operative complications: Bleeding requiring unexpected transfusion
Item
Indicate if the patient experienced any of the following complications: 2 = Bleeding requiring unexpected transfusion
boolean
C0032787 (UMLS CUI [1])
C0019080 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C4055646 (UMLS CUI [2,3])
C1879316 (UMLS CUI [2,4])
Post-operative complications: Infection: abscess
Item
Indicate if the patient experienced any of the following complications: 3 = Infection: abscess
boolean
C0032787 (UMLS CUI [1])
C0000833 (UMLS CUI [2])
Post-operative complications: Infection: graft material
Item
Indicate if the patient experienced any of the following complications: 4 = Infection: graft material
boolean
C0032787 (UMLS CUI [1])
C0181074 (UMLS CUI [2,1])
C3714514 (UMLS CUI [2,2])
Post-operative complications: Loss of vision
Item
Indicate if the patient experienced any of the following complications: 5 = Loss of vision
boolean
C0032787 (UMLS CUI [1])
C0730512 (UMLS CUI [2])
Post-operative complications: Loss of globe
Item
Indicate if the patient experienced any of the following complications: 6 = Loss of globe
boolean
C0032787 (UMLS CUI [1])
C1517945 (UMLS CUI [2,1])
C0015392 (UMLS CUI [2,2])
Post-operative complications: Wound: flap necrosis
Item
Indicate if the patient experienced any of the following complications: 7 = Wound: flap necrosis
boolean
C0032787 (UMLS CUI [1])
C1096106 (UMLS CUI [2,1])
C4075512 (UMLS CUI [2,2])
Post-operative complications: Iatrogenic injury to cornea/globe
Item
Indicate if the patient experienced any of the following complications: 8 = Iatrogenic injury to cornea/globe
boolean
C0032787 (UMLS CUI [1])
C0854404 (UMLS CUI [2,1])
C0010031 (UMLS CUI [2,2])
C0854404 (UMLS CUI [3,1])
C0015392 (UMLS CUI [3,2])
Post-operative complications: Iatrogenic injury to nerve(s)
Item
Indicate if the patient experienced any of the following complications: 9 = Iatrogenic injury to nerve(s)
boolean
C0032787 (UMLS CUI [1])
C0854404 (UMLS CUI [2,1])
C0027740 (UMLS CUI [2,2])
Post-operative complications: Iatrogenic injury to permanent teeth
Item
Indicate if the patient experienced any of the following complications: 10 = Iatrogenic injury to permanent teeth
boolean
C0032787 (UMLS CUI [1])
C0854404 (UMLS CUI [2,1])
C0348070 (UMLS CUI [2,2])
Post-operative complications: Respiratory distress requiring mechanical ventilation
Item
Indicate if the patient experienced any of the following complications: 11 = Respiratory distress requiring mechanical ventilation
boolean
C0032787 (UMLS CUI [1])
C0476273 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C0199470 (UMLS CUI [2,3])
Post-operative complications: Ankylosis of mandible/temporomandibular joints
Item
Indicate if the patient experienced any of the following complications: 12 = Ankylosis of mandible/temporomandibular joints
boolean
C0032787 (UMLS CUI [1])
C0003090 (UMLS CUI [2,1])
C0039493 (UMLS CUI [2,2])
Post-operative complications: Hardware failure: dentofacial orthopaedics
Item
Indicate if the patient experienced any of the following complications: 13 = Hardware failure: dentofacial orthopaedics
boolean
C0032787 (UMLS CUI [1])
C4035912 (UMLS CUI [2,1])
C4544520 (UMLS CUI [2,2])
C0029355 (UMLS CUI [2,3])
Post-operative complications: Hardware failure (exposure of infection)
Item
Indicate if the patient experienced any of the following complications: 14 = Hardware failure (exposure of infection)
boolean
C0032787 (UMLS CUI [1])
C4035912 (UMLS CUI [2,1])
C0332157 (UMLS CUI [2,2])
C3714514 (UMLS CUI [2,3])
Post-operative complications: Death
Item
Indicate if the patient experienced any of the following complications: 15 = Death
boolean
C0032787 (UMLS CUI [1])
C0011065 (UMLS CUI [2])
Date of arrival
Item
If patient was hospitalized please indicate the date the patient first arrived
date
C0205435 (UMLS CUI [1,1])
C3263562 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,3])
Date of discharge
Item
Indicate the date the patient was discharged
date
C2361123 (UMLS CUI [1])

Please use this form for feedback, questions and suggestions for improvements.

Fields marked with * are required.

Do you need help on how to use the search function? Please watch the corresponding tutorial video for more details and learn how to use the search function most efficiently.

Watch Tutorial