ID
38986
Descrição
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 5 and 12 years old patient - Clinical-reported Form. It has to be filled in when the patient is 5 and 12 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.
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Versões (4)
- 18/11/2019 18/11/2019 -
- 23/11/2019 23/11/2019 -
- 26/11/2019 26/11/2019 - Sarah Riepenhausen
- 30/04/2020 30/04/2020 - Sarah Riepenhausen
Titular dos direitos
ICHOM
Transferido a
18 de novembro de 2019
DOI
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Licença
Creative Commons BY-NC 3.0
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ICHOM Craniofacial Microsomia
5, 12 years old patient - Clinical-reported
- StudyEvent: ODM
Descrição
Patient characteristics
Alias
- UMLS CUI-1
- C0815172
Descrição
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
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C0376634
- UMLS CUI [1,3]
- C0332514
Descrição
Hearing
Alias
- UMLS CUI-1
- C0018767
Descrição
Only to fill in for 5 years old patients. Inclusion criteria: Patients with craniofacial microsomia Timing: 2,5 years Reporting Source: Clinician-reported Type: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1]
- C0018768
Descrição
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0543467
- UMLS CUI [1,2]
- C3881509
Descrição
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12, 22 years Reporting Source: Clinician-reported Type: Numerical value; dB Response option: Free text
Tipo de dados
text
Unidades de medida
- dB
Alias
- UMLS CUI [1]
- C0004286
Descrição
Speech
Alias
- UMLS CUI-1
- C0037817
Descrição
Supporting definition: Speech assessment material can be found at https://clispi.org/node/15 Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 8 , 12, 22 years Reporting Source: Clinician-reported Type: Single answer
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0439165
- UMLS CUI [1,2]
- C0871699
- UMLS CUI [1,3]
- C2349182
Descrição
Oral health
Alias
- UMLS CUI-1
- C0029162
Descrição
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of decayed teeth
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0226984
- UMLS CUI [1,2]
- C0018759
- UMLS CUI [2,1]
- C0429160
- UMLS CUI [2,2]
- C3266841
Descrição
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of missing teeth
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0226984
- UMLS CUI [1,2]
- C0018759
- UMLS CUI [2,1]
- C0429158
- UMLS CUI [2,2]
- C3266841
Descrição
Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of filled teeth
Tipo de dados
integer
Alias
- UMLS CUI [1,1]
- C0226984
- UMLS CUI [1,2]
- C0018759
- UMLS CUI [2,1]
- C3266841
- UMLS CUI [2,2]
- C0449788
- UMLS CUI [2,3]
- C0457651
Descrição
Appearance
Alias
- UMLS CUI-1
- C0700364
Descrição
As a license agreement is needed for use of the PAT-CFM, the actual 13 (26) questions are not part of this version of the standard set. ICHOM OID's are: PATCFM_Q01 to PATCFM_Q13, each question is devided into an A and B version (e.g. PATCFM_Q01A, PATCFM_Q01B). Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 8 , 12, 22 years Reporting Source: Clinician-reported Type: Multiple answers
Tipo de dados
text
Alias
- UMLS CUI [1,1]
- C0031437
- UMLS CUI [1,2]
- C1516048
- UMLS CUI [1,3]
- C0376634
- UMLS CUI [1,4]
- C0034394
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5, 12 years old patient - Clinical-reported
- StudyEvent: ODM
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