ID
40683
Descripción
ICHOM Craniofacial Microsomia data collection Version 1.0.4 April 18th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. 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. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
Link
Palabras clave
Versiones (4)
- 23/11/19 23/11/19 -
- 26/11/19 26/11/19 - Sarah Riepenhausen
- 3/12/19 3/12/19 - Sarah Riepenhausen
- 30/4/20 30/4/20 - Sarah Riepenhausen
Titular de derechos de autor
ICHOM
Subido en
30 de abril de 2020
DOI
Para solicitar uno, por favor iniciar sesión.
Licencia
Creative Commons BY-NC 4.0
Comentarios del modelo :
Puede comentar sobre el modelo de datos aquí. A través de las burbujas de diálogo en los grupos de elementos y elementos, puede agregar comentarios específicos.
Comentarios de grupo de elementos para :
Comentarios del elemento para :
Para descargar modelos de datos, debe haber iniciado sesión. Por favor iniciar sesión o Registrate gratis.
ICHOM Craniofacial Microsomia
Complications post-intervention
- StudyEvent: ODM
Descripción
Patient characteristics
Alias
- UMLS CUI-1
- C0815172
Descripción
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 datos
integer
Alias
- UMLS CUI [1,1]
- C0332514
- UMLS CUI [1,2]
- C0432131
Descripción
Burden of care
Alias
- UMLS CUI-1
- C0087111
- UMLS CUI-2
- C2828008
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1,1]
- C0032787
- UMLS CUI [1,2]
- C0549184
Descripción
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
Tipo de datos
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
Descripción
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
Tipo de datos
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
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2]
- C0000833
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C0181074
- UMLS CUI [2,2]
- C3714514
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2]
- C0730512
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C1517945
- UMLS CUI [2,2]
- C0015392
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C1096106
- UMLS CUI [2,2]
- C4075512
Descripción
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
Tipo de datos
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
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C0854404
- UMLS CUI [2,2]
- C0027740
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C0854404
- UMLS CUI [2,2]
- C0348070
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C0476273
- UMLS CUI [2,2]
- C1514873
- UMLS CUI [2,3]
- C0199470
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C0003090
- UMLS CUI [2,2]
- C0039493
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C4035912
- UMLS CUI [2,2]
- C4544520
- UMLS CUI [2,3]
- C0029355
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2,1]
- C4035912
- UMLS CUI [2,2]
- C0332157
- UMLS CUI [2,3]
- C3714514
Descripción
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
Tipo de datos
boolean
Alias
- UMLS CUI [1]
- C0032787
- UMLS CUI [2]
- C0011065
Descripción
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
Tipo de datos
date
Alias
- UMLS CUI [1,1]
- C0205435
- UMLS CUI [1,2]
- C3263562
- UMLS CUI [1,3]
- C0011008
Descripción
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
Tipo de datos
date
Alias
- UMLS CUI [1]
- C2361123
Similar models
Complications post-intervention
- StudyEvent: ODM
C0184661 (UMLS CUI [1,2])
C0432131 (UMLS CUI [1,2])
C0549184 (UMLS CUI [1,2])
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])
C0019080 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C4055646 (UMLS CUI [2,3])
C1879316 (UMLS CUI [2,4])
C0000833 (UMLS CUI [2])
C0181074 (UMLS CUI [2,1])
C3714514 (UMLS CUI [2,2])
C0730512 (UMLS CUI [2])
C1517945 (UMLS CUI [2,1])
C0015392 (UMLS CUI [2,2])
C1096106 (UMLS CUI [2,1])
C4075512 (UMLS CUI [2,2])
C0854404 (UMLS CUI [2,1])
C0010031 (UMLS CUI [2,2])
C0854404 (UMLS CUI [3,1])
C0015392 (UMLS CUI [3,2])
C0854404 (UMLS CUI [2,1])
C0027740 (UMLS CUI [2,2])
C0854404 (UMLS CUI [2,1])
C0348070 (UMLS CUI [2,2])
C0476273 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C0199470 (UMLS CUI [2,3])
C0003090 (UMLS CUI [2,1])
C0039493 (UMLS CUI [2,2])
C4035912 (UMLS CUI [2,1])
C4544520 (UMLS CUI [2,2])
C0029355 (UMLS CUI [2,3])
C4035912 (UMLS CUI [2,1])
C0332157 (UMLS CUI [2,2])
C3714514 (UMLS CUI [2,3])
C0011065 (UMLS CUI [2])
C3263562 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,3])