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.
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Versions (2)
- 06/08/2019 06/08/2019 -
- 30/04/2020 30/04/2020 - Sarah Riepenhausen
Détendeur de droits
ICHOM
Téléchargé le
6 août 2019
DOI
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Licence
Creative Commons BY-NC 3.0
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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
Type de données
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
Type de données
text
Alias
- UMLS CUI [1]
- C0034510
Description
INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer
Type de données
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
Type de données
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
Type de données
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
Type de données
integer
Unités de mesure
- 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
Type de données
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
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C0013658 (UMLS CUI [1,2])
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C0033145 (UMLS CUI-2)
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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])
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