ID

40628

Beskrivning

ICHOM Cleft Lip and Palate Study description: ICHOM Cleft Lip and Palate data collection Version 3.0.6 Revised: March 20th, 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 Cleft Lip and Palate, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Cleft Lip | Cleft Palate | Cleft Lip and Alveolus | Cleft Lip and Palate | Robin Sequence | 22q11 | CL&P Associated with Other Craniofacial Abnormalities | CL&P Associated with Other Congenital Abnormalities Treatment approaches: Audiology | Otology | Speech/Communication | Feeding/Nutrition | Plastic Surgery | Oral & Maxillofacial Surgery | Dentistry | Orthodontics | Pediatrics | Nursing | Genetics | Social Work | Psychology/Psychiatry This document contains the Follow-up 22 years - Patient-reported. It has to be filled in 22 years after Baseline index event. Collecting Patient-Reported Outcome Measure: CLEFT-Q. As there is no permission for publication of this questionnaire on this portal, only the total score will be included in this version of the standard set. Nasal Obstruction NOSE Scale-Patient . The study for development and validation of the NOSE Scale was funded by the AAO-HNS/F. If others wish to use the tool, there is no cost, but the study should be referenced: Stewart MG, Witsell DL, Smith TL, Weaver EM, Yueh B, Hannley MT. Development and validation of the Nasal Obstruction Symptom Evaluation (NOSE) scale. Otolaryngol Head Neck Surg 2004;130:157-63. COHIP Oral Symptoms Scale-Patient. The COHIP is free for all health care organizations, and a license is not needed. 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. Intelligibility in Context Scale (ICS)-Parent. The ICS is free for all health care organizations, and a license is not needed. McLeod, S., Harrison, L. J., & McCormack, J. (2012). Intelligibility in Context Scale. Bathurst, NSW, Australia: Charles Sturt University. Available at http://www.csu.edu.au/research/multilingual-speech/ics under CC 3.0 by-nc-nd. PCC-Clinician. The PCC is free for all health care organizations, and a license is not needed. Reference: Allori, A. C., Kelley, T., Meara, J. G., Albert, A., Bonanthaya, K., Chapman, K., … Wong, K. W. (2017). A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care. The Cleft Palate-Craniofacial Journal, 54(5), 540–554 The Standard set of ICHOM was supported by the Boston Children’s Hospital, The Children’s Hospital of Philadelphia. Texas Children’s Hospital and the Great Ormond Street Hospital. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Länk

http://www.ichom.org/

Nyckelord

Versioner (2)
  1. 2019-08-06 2019-08-06 -
  2. 2020-04-30 2020-04-30 - Sarah Riepenhausen
Rättsinnehavare

ICHOM

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30 april 2020

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Creative Commons BY-NC 4.0
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ICHOM Cleft Lip and Palate

Engelsk

Follow-up 22 years - Patient-reported

1 Formulär  
Administrative Data
Beskrivning

Administrative Data

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

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: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution

Datatyp

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline
Beskrivning

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_AT (After treatment); VARIABLEID_AS (After surgery); VARIABLEID_UPDATE (Update at least annually), etc.

Datatyp

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
CLEFTQ
Beskrivning

CLEFTQ

Alias
UMLS CUI-1
C4321245
UMLS CUI-2
C0008925
UMLS CUI-3
C0034394
Cleft-Q Appearance of the Face, total score
Beskrivning

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Appearance of the Face are not part of this version of the standard set. In the original standard set there are 9 questions of Cleft-Q Appearance of the Face. The ICHOM OID's are: CLEFTQFACE_Q01 to CLEFTQFACE_Q09 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 8, 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C4321245
UMLS CUI [1,2]
C0008925
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
UMLS CUI [2,1]
C0700364
UMLS CUI [2,2]
C0015450
Cleft-Q Appearance of the Jaws, total score
Beskrivning

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Appearance of the Jaws are not part of this version of the standard set. In the original standard set there are 7 questions of Cleft-Q Appearance of the Jaws. The ICHOM OID's are: CLEFTQJAW_Q01 to CLEFTQJAW_Q07 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C4321245
UMLS CUI [1,2]
C0008925
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
UMLS CUI [2,1]
C0700364
UMLS CUI [2,2]
C0022359
Cleft-Q Appearance of the Teeth, total score
Beskrivning

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Appearance of the Teeth are not part of this version of the standard set. In the original standard set there are 8 questions of Cleft-Q Appearance of the Teeth. The ICHOM OID's are: CLEFTQDENTAL_Q01 to CLEFTQDENTAL_Q08 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 8, 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C4321245
UMLS CUI [1,2]
C0008925
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
UMLS CUI [2,1]
C0700364
UMLS CUI [2,2]
C0040426
Cleft-Q Social Function, total score
Beskrivning

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Social Function are not part of this version of the standard set. In the original standard set there are 10 questions of Cleft-Q Social Function. The ICHOM OID's are: CLEFTQSOCLIFE_Q01 to CLEFTQSOCLIFE_Q10 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 8, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C4321245
UMLS CUI [1,2]
C0008925
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
UMLS CUI [2]
C0815198
Cleft-Q Eating and Drinking, total score
Beskrivning

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Eating and Drinking are not part of this version of the standard set. In the original standard set there are 9 questions of Cleft-Q Eating and Drinking. The ICHOM OID's are: CLEFTQED_Q01 to CLEFTQED_Q09 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 8, 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C4321245
UMLS CUI [1,2]
C0008925
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
UMLS CUI [2,1]
C0013470
UMLS CUI [2,2]
C0684271
Cleft-Q Speech Distress, total score
Beskrivning

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Speech Distress are not part of this version of the standard set. In the original standard set there are 10 questions of Cleft-Q Speech Distress. The ICHOM OID's are: CLEFTQSPEAK_Q01 to CLEFTQSPEAK_Q10 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C4321245
UMLS CUI [1,2]
C0008925
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
UMLS CUI [2]
C0037822
Cleft-Q Speech Function, total score
Beskrivning

As there is no permission for use of this questionnaire, the actual questions of Cleft-Q Speech Function are not part of this version of the standard set. In the original standard set there are 12 questions of Cleft-Q Speech Function. The ICHOM OID's are: CLEFTQSPEECH_Q01 to CLEFTQSPEECH_Q12 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 12, 22 years REPORTING SOURCE: Patient-reported TYPE: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C4321245
UMLS CUI [1,2]
C0008925
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
UMLS CUI [2,1]
C0037817
UMLS CUI [2,2]
C0542341
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Similar models

Follow-up 22 years - Patient-reported

1 Formulär
Name
Typ
Description | Question | Decode (Coded Value)
Datatyp
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
CLEFTQ
C4321245 (UMLS CUI-1)
C0008925 (UMLS CUI-2)
C0034394 (UMLS CUI-3)
Cleft-Q Appearance of the Face, total score
Item
Cleft-Q Appearance of the Face, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0700364 (UMLS CUI [2,1])
C0015450 (UMLS CUI [2,2])
Cleft-Q Appearance of the Jaws, total score
Item
Cleft-Q Appearance of the Jaws, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0700364 (UMLS CUI [2,1])
C0022359 (UMLS CUI [2,2])
Cleft-Q Appearance of the Teeth, total score
Item
Cleft-Q Appearance of the Teeth, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0700364 (UMLS CUI [2,1])
C0040426 (UMLS CUI [2,2])
Cleft-Q Social Function, total score
Item
Cleft-Q Social Function, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0815198 (UMLS CUI [2])
Cleft-Q Eating and Drinking, total score
Item
Cleft-Q Eating and Drinking, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0013470 (UMLS CUI [2,1])
C0684271 (UMLS CUI [2,2])
Cleft-Q Speech Distress, total score
Item
Cleft-Q Speech Distress, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0037822 (UMLS CUI [2])
Cleft-Q Speech Function, total score
Item
Cleft-Q Speech Function, total score
integer
C4321245 (UMLS CUI [1,1])
C0008925 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0037817 (UMLS CUI [2,1])
C0542341 (UMLS CUI [2,2])
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