ID

40631

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 - Parent-reported. It has to be filled in 5 and 12 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.

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

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April 30, 2020

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Creative Commons BY-NC 4.0
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ICHOM Cleft Lip and Palate

English

Follow-up - Parent-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
Time Relative to Baseline
Description

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.

Data type

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Degree of health
Description

Degree of health

Alias
UMLS CUI-1
C0018759
1. Do you understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0037824
UMLS CUI [2,2]
C0008059
2. Do immediate members of your family understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0086282
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
3. Do extended members of your family understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0231449
UMLS CUI [2,2]
C0086282
UMLS CUI [2,3]
C0037824
UMLS CUI [2,4]
C0008059
4. Do your child’s friends understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0079382
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
5. Do other acquaintances understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0337609
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
6. Do your child’s teachers understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0221457
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
7. Do strangers understand your child?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C4273666
UMLS CUI [2,1]
C0871443
UMLS CUI [2,2]
C0037824
UMLS CUI [2,3]
C0008059
Has your child ever needed a hearing aid?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0018768
For how long?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported TYPE: Numerical value RESPONSE OPTION: Numerical value of duration in years

Data type

integer

Measurement units
  • Years
Alias
UMLS CUI [1,1]
C0018768
UMLS CUI [1,2]
C0449238
Years
How many times has your child had an ear infection (otitis media) in the last 12 months?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported TYPE: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C3825879
UMLS CUI [1,2]
C4086728
Has your child required ear tubes (myringotomy and tympanostomy tube procedure – sometimes called a grommet) to improve hearing?
Description

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12 years REPORTING SOURCE: Parent-reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0743375
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Similar models

Follow-up - Parent-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])
Time Relative to Baseline
Item
Time Relative to Baseline
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Degree of health
C0018759 (UMLS CUI-1)
Item
1. Do you understand your child?
integer
C4273666 (UMLS CUI [1])
C0037824 (UMLS CUI [2,1])
C0008059 (UMLS CUI [2,2])
Question 1 of COHIP OSS
Code List
1. Do you understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
2. Do immediate members of your family understand your child?
integer
C4273666 (UMLS CUI [1])
C0086282 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
2. Do immediate members of your family understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
3. Do extended members of your family understand your child?
integer
C4273666 (UMLS CUI [1])
C0231449 (UMLS CUI [2,1])
C0086282 (UMLS CUI [2,2])
C0037824 (UMLS CUI [2,3])
C0008059 (UMLS CUI [2,4])
Question 1 of COHIP OSS
Code List
3. Do extended members of your family understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
4. Do your child’s friends understand your child?
integer
C4273666 (UMLS CUI [1])
C0079382 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
4. Do your child’s friends understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
5. Do other acquaintances understand your child?
integer
C4273666 (UMLS CUI [1])
C0337609 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
5. Do other acquaintances understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
6. Do your child’s teachers understand your child?
integer
C4273666 (UMLS CUI [1])
C0221457 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
6. Do your child’s teachers understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
7. Do strangers understand your child?
integer
C4273666 (UMLS CUI [1])
C0871443 (UMLS CUI [2,1])
C0037824 (UMLS CUI [2,2])
C0008059 (UMLS CUI [2,3])
Question 1 of COHIP OSS
Code List
7. Do strangers understand your child?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes  (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Usually (4)
C3888388 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
Has your child ever needed a hearing aid?
integer
C0018768 (UMLS CUI [1])
Question 1 of COHIP OSS
Code List
Has your child ever needed a hearing aid?
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
Question 2 of Otologic health
Item
For how long?
integer
C0018768 (UMLS CUI [1,1])
C0449238 (UMLS CUI [1,2])
Question 3 of Otologic health
Item
How many times has your child had an ear infection (otitis media) in the last 12 months?
integer
C3825879 (UMLS CUI [1,1])
C4086728 (UMLS CUI [1,2])
Item
Has your child required ear tubes (myringotomy and tympanostomy tube procedure – sometimes called a grommet) to improve hearing?
integer
C0743375 (UMLS CUI [1])
Question 4 of Otologic health
Code List
Has your child required ear tubes (myringotomy and tympanostomy tube procedure – sometimes called a grommet) to improve hearing?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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