ID
37536
Description
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/ 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 Baseline - Parent-reported. It has to be filled in at index event (first doctor’s visit). 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 according to ICHOM. 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 (according to ICHOM). 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.
Link
Keywords
Versions (2)
- 8/6/19 8/6/19 -
- 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder
ICHOM
Uploaded on
August 6, 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 Cleft Lip and Palate
Baseline - Parent-reported
- StudyEvent: ODM
Description
Demographic factors
Alias
- UMLS CUI-1
- C1704791
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical, parent-reported, or patient-reported TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C0079399
Description
In the original form response option is N/A. A codelist ist not included because it varies by country and should be determined by country (not for cross-country comparison). INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Clinical, parent-reported, or patient-reported TYPE: Single answer
Data type
text
Alias
- UMLS CUI [1]
- C0034510
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0030551
- UMLS CUI [1,2]
- C0013658
Description
Other
Alias
- UMLS CUI-1
- C0205394
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C0237459
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer RESPONSE OPTIONS: List of countries
Data type
text
Alias
- UMLS CUI [1,1]
- C0237459
- UMLS CUI [1,2]
- C0454664
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Numerical value of age in months
Data type
integer
Measurement units
- months
Alias
- UMLS CUI [1,1]
- C0001779
- UMLS CUI [1,2]
- C0237459
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0442519
- UMLS CUI [1,2]
- C0023008
- UMLS CUI [1,3]
- C1705242
- UMLS CUI [1,4]
- C0086390
- UMLS CUI [1,5]
- C0023008
Similar models
Baseline - Parent-reported
- StudyEvent: ODM
(Comment:en)
(Comment:en)
(Comment:en)
C0013658 (UMLS CUI [1,2])
(Comment:en)
C0033145 (UMLS CUI-2)
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
C0454664 (UMLS CUI [1,2])
C0237459 (UMLS CUI [1,2])
C0023008 (UMLS CUI [1,2])
C1705242 (UMLS CUI [1,3])
C0086390 (UMLS CUI [1,4])
C0023008 (UMLS CUI [1,5])
(Comment:en)
(Comment:en)