ID

37538

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 - Administrative-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

http://www.ichom.org/

Keywords

Versions (2)
  1. 8/6/19 8/6/19 -
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

August 6, 2019

DOI

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License

Creative Commons BY-NC 3.0
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ICHOM Cleft Lip and Palate

English

Baseline - Administrative-reported

1 forms  
Administrative Data
Description

Administrative Data

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

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

Data type

integer

Alias
UMLS CUI [1]
C1269815
Demographic factors
Description

Demographic factors

Alias
UMLS CUI-1
C1704791
Indicate the patient's age at first encounter with team
Description

SUPPORTING DEFINITION: Recorded in months at 24 months and younger. Recorded in years if older than 24 months INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Administrative data TYPE: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C1514821
Unit of Age
Description

Note: This Item does not exist in the original standard set. It can be filled in additionally to the item "FIRSTENC". SUPPORTING DEFINITION: Recorded in months at 24 months and younger. Recorded in years if older than 24 months INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Administrative data TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C1519795
Geographic location where the patient resides, specified by country and country specific postal code.
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Administrative data TYPE: Alphanumeric value

Data type

text

Alias
UMLS CUI [1]
C0237096
Other
Description

Other

Alias
UMLS CUI-1
C0205394
Indicate the patient’s insurance status
Description

INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Administrative data TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C1548070
Specify the distance in km from treatment team
Description

SUPPORTING DEFINITION: Calculated from residence and hospital location INCLUSION CRITERIA: All patients TIMING: Baseline and ongoing REPORTING SOURCE: Administrative data TYPE: Numerical value RESPONSE OPTIONS: Numerical value of distance in km

Data type

integer

Measurement units
  • km
Alias
UMLS CUI [1,1]
C0012751
UMLS CUI [1,2]
C0019994
UMLS CUI [1,3]
C0237096
km
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Similar models

Baseline - Administrative-reported

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Item Group
Demographic factors
C1704791 (UMLS CUI-1)
Age at first encounter with team
Item
Indicate the patient's age at first encounter with team
integer
C0001779 (UMLS CUI [1,1])
C1514821 (UMLS CUI [1,2])
Item
Unit of Age
integer
C0001779 (UMLS CUI [1,1])
C1519795 (UMLS CUI [1,2])
Unit of Age
Code List
Unit of Age
CL Item
month (1)
C0439231 (UMLS CUI-1)
(Comment:en)
CL Item
year (2)
C0439234 (UMLS CUI-1)
(Comment:en)
Residence
Item
Geographic location where the patient resides, specified by country and country specific postal code.
text
C0237096 (UMLS CUI [1])
Item Group
Other
C0205394 (UMLS CUI-1)
Item
Indicate the patient’s insurance status
integer
C1548070 (UMLS CUI [1])
Lost to follow-up (perioperative)
Code List
Indicate the patient’s insurance status
CL Item
Uninsured (0)
C0087134 (UMLS CUI-1)
(Comment:en)
CL Item
Private insurance (1)
C3845555 (UMLS CUI-1)
(Comment:en)
CL Item
Governmental insurance (2)
C0021682 (UMLS CUI-1)
(Comment:en)
Distance from treatment team
Item
Specify the distance in km from treatment team
integer
C0012751 (UMLS CUI [1,1])
C0019994 (UMLS CUI [1,2])
C0237096 (UMLS CUI [1,3])
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