ID

40633

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 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. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Keywords

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

ICHOM

Uploaded on

April 30, 2020

DOI

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License

Creative Commons BY-NC 4.0

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ICHOM Cleft Lip and Palate

Baseline - Parent-reported

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 sex at birth
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
What is the patient's/your ethnicity?
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
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
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
Other
Description

Other

Alias
UMLS CUI-1
C0205394
Did you adopt your child?
Description

INCLUSION CRITERIA: All patients TIMING: Baseline REPORTING SOURCE: Parent-reported TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0237459
From which country was your child was adopted from?
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
At what age was your child adopted?
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
months
Is the language spoken at home different from the language spoken by the care team?
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

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)
Item
Indicate the patient’s sex at birth
integer
C0079399 (UMLS CUI [1])
Code List
Indicate the patient’s sex at birth
CL Item
Male (1)
C1706180 (UMLS CUI-1)
(Comment:en)
CL Item
Female (2)
C0086287 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Race/ethnicity
Item
What is the patient's/your ethnicity?
text
C0034510 (UMLS CUI [1])
Item
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
integer
C0030551 (UMLS CUI [1,1])
C0013658 (UMLS CUI [1,2])
Code List
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
Primary (1)
C0013658 (UMLS CUI-1)
C0033145 (UMLS CUI-2)
(Comment:en)
CL Item
Secondary  (2)
C0557289 (UMLS CUI-1)
(Comment:en)
CL Item
Tertiary (3)
C0557291 (UMLS CUI-1)
(Comment:en)
Item Group
Other
C0205394 (UMLS CUI-1)
Item
Did you adopt your child?
integer
C0237459 (UMLS CUI [1])
Code List
Did you adopt your child?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Country of adoption
Item
From which country was your child was adopted from?
text
C0237459 (UMLS CUI [1,1])
C0454664 (UMLS CUI [1,2])
Age of adoption
Item
At what age was your child adopted?
integer
C0001779 (UMLS CUI [1,1])
C0237459 (UMLS CUI [1,2])
Item
Is the language spoken at home different from the language spoken by the care team?
integer
C0442519 (UMLS CUI [1,1])
C0023008 (UMLS CUI [1,2])
C1705242 (UMLS CUI [1,3])
C0086390 (UMLS CUI [1,4])
C0023008 (UMLS CUI [1,5])
Code List
Is the language spoken at home different from the language spoken by the care team?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)

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