ID
38830
Beschrijving
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.
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Versies (3)
- 07-11-19 07-11-19 -
- 18-11-19 18-11-19 -
- 30-04-20 30-04-20 - Sarah Riepenhausen
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ICHOM
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ICHOM Craniofacial Microsomia
2 years Clinical Form
- StudyEvent: ODM
Beschrijving
Patient characteristics
Alias
- UMLS CUI-1
- C0815172
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0001779
- UMLS CUI [1,2]
- C1514821
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1]
- C0079399
Beschrijving
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
Datatype
text
Alias
- UMLS CUI [1]
- C0034510
- UMLS CUI [2]
- C0015031
Beschrijving
Supporting Definition:Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C0432131
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C0376634
- UMLS CUI [1,3]
- C0332514
Beschrijving
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
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C0376634
- UMLS CUI [1,3]
- C0439793
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0432131
- UMLS CUI [1,2]
- C0580586
- UMLS CUI [1,3]
- C1521970
- UMLS CUI [1,4]
- C0018787
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0432131
- UMLS CUI [1,2]
- C0580586
- UMLS CUI [1,3]
- C1521970
- UMLS CUI [1,4]
- C0022646
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0432131
- UMLS CUI [1,2]
- C0580586
- UMLS CUI [1,3]
- C1521970
- UMLS CUI [1,4]
- C0027763
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0432131
- UMLS CUI [1,2]
- C0580586
- UMLS CUI [1,3]
- C1521970
- UMLS CUI [1,4]
- C0012240
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0432131
- UMLS CUI [1,2]
- C0580586
- UMLS CUI [1,3]
- C1521970
- UMLS CUI [1,4]
- C0037253
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0432131
- UMLS CUI [1,2]
- C0580586
- UMLS CUI [1,3]
- C1521970
- UMLS CUI [1,4]
- C0035237
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0596612
- UMLS CUI [1,2]
- C0376634
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer Response option: Free text
Datatype
text
Alias
- UMLS CUI [1,1]
- C0376634
- UMLS CUI [1,2]
- C0026882
Beschrijving
Family characteristics and community environment
Alias
- UMLS CUI-1
- C1521970
- UMLS CUI-2
- C0015576
- UMLS CUI-3
- C0563116
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0030551
- UMLS CUI [1,2]
- C0013658
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Alphanumeric value Response option: Alphanumeric entry
Datatype
text
Alias
- UMLS CUI [1,1]
- C0454664
- UMLS CUI [1,2]
- C0237096
- UMLS CUI [1,3]
- C0421454
Beschrijving
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
Datatype
float
Maateenheden
- km
Alias
- UMLS CUI [1,1]
- C0012751
- UMLS CUI [1,2]
- C0019994
- UMLS CUI [1,3]
- C0237096
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C1302313
- UMLS CUI [1,2]
- C1518988
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C1302313
- UMLS CUI [1,2]
- C4696991
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0030704
- UMLS CUI [1,2]
- C0184681
Beschrijving
Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0030704
- UMLS CUI [1,2]
- C0439787
Beschrijving
Hearing
Alias
- UMLS CUI-1
- C0018767
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2 years Clinical Form
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C0026882 (UMLS CUI [1,2])
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C4696991 (UMLS CUI [1,2])
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