ID

37550

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 Post-Operative - Administrative Form. It has to be filled in after surgical intervention. 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. 8/7/19 8/7/19 -
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

August 7, 2019

DOI

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License

Creative Commons BY-NC 3.0
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ICHOM Cleft Lip and Palate

English

Post-Operative - Administrative Form

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
Burden of treatment and complications
Description

Burden of treatment and complications

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C0009566
Indicate if the patient died
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Administrative data TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0011065
Indicate the date of death
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Administrative data TYPE: Date by DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C1148348
DD/MM/YYYY
Indicate the cause of death
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Administrative data TYPE: Free text

Data type

text

Alias
UMLS CUI [1]
C0007465
Indicate if patient readmitted to a hospital inpatient ward for any reason within 30 days of operation
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Administrative data TYPE: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0600290
Indicate number of days spent in the hospital after the operative day
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Administrative data RESPONSE OPTIONS: Numerical value

Data type

integer

Measurement units
  • days
Alias
UMLS CUI [1,1]
C0600290
UMLS CUI [1,2]
C0023303
days
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Similar models

Post-Operative - Administrative Form

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
Burden of treatment and complications
C0087111 (UMLS CUI-1)
C0009566 (UMLS CUI-2)
Item
Indicate if the patient died
integer
C0011065 (UMLS CUI [1])
Post-operative complications
Code List
Indicate if the patient died
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
Date of death
Item
Indicate the date of death
date
C1148348 (UMLS CUI [1])
Cause of death
Item
Indicate the cause of death
text
C0007465 (UMLS CUI [1])
Item
Indicate if patient readmitted to a hospital inpatient ward for any reason within 30 days of operation
integer
C0600290 (UMLS CUI [1])
Post-operative complications
Code List
Indicate if patient readmitted to a hospital inpatient ward for any reason within 30 days of operation
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
Readmissions: Number of hospitalized days following a procedure
Item
Indicate number of days spent in the hospital after the operative day
integer
C0600290 (UMLS CUI [1,1])
C0023303 (UMLS CUI [1,2])
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