ID

40638

Descripción

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 - Administrative Form. It has to be filled in 22 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 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/

Palabras clave

Versiones (5)
  1. 7/8/19 7/8/19 -
  2. 12/8/19 12/8/19 -
  3. 30/4/20 30/4/20 - Sarah Riepenhausen
  4. 30/4/20 30/4/20 - Sarah Riepenhausen
  5. 30/4/20 30/4/20 - Sarah Riepenhausen
Titular de derechos de autor

ICHOM

Subido en

30 de abril de 2020

DOI

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Licencia

Creative Commons BY-NC 4.0
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ICHOM Cleft Lip and Palate

Inglés

Follow-up - Administrative Form

1 formularios  
Administrative Data
Descripción

Administrative Data

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

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

Tipo de datos

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline
Descripción

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.

Tipo de datos

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Demographic factors
Descripción

Demographic factors

Alias
UMLS CUI-1
C1704791
Geographic location where the patient resides, specified by country and country specific postal code.
Descripción

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

Tipo de datos

text

Alias
UMLS CUI [1]
C0237096
Treatment
Descripción

Treatment

Alias
UMLS CUI-1
C0087111
Indicate the age of transfer into your institution
Descripción

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Administrative data TYPE: Numerical value RESPONSE OPTIONS: Numerical value of age in years

Tipo de datos

integer

Unidades de medida
  • years
Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0439786
UMLS CUI [1,3]
C0001779
years
Indicate the age of transfer out of your institution
Descripción

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Administrative data TYPE: Numerical value RESPONSE OPTIONS: Numerical value of age in years

Tipo de datos

integer

Unidades de medida
  • years
Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0439787
UMLS CUI [1,3]
C0001779
years
Other
Descripción

Other

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

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

Tipo de datos

integer

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

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

Tipo de datos

integer

Unidades de medida
  • km
Alias
UMLS CUI [1,1]
C0012751
UMLS CUI [1,2]
C0019994
UMLS CUI [1,3]
C0237096
km
Degree of health
Descripción

Degree of health

Alias
UMLS CUI-1
C0018759
Indicate the number of interventions the patient underwent requiring anesthesia (Palate)
Descripción

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 22 years REPORTING SOURCE: Administrative data TYPE: Numerical RESPONSE OPTIONS: Numerical value of interventions for palate

Tipo de datos

integer

Alias
UMLS CUI [1,1]
C0184661
UMLS CUI [1,2]
C0002903
UMLS CUI [1,3]
C0700374
UMLS CUI [1,4]
C0449788
Indicate the number of interventions the patient underwent requiring anesthesia (Lip/Nose)
Descripción

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 22 years REPORTING SOURCE: Administrative data TYPE: Numerical RESPONSE OPTIONS: Numerical value of interventions for palate

Tipo de datos

integer

Alias
UMLS CUI [1,1]
C0184661
UMLS CUI [1,2]
C0002903
UMLS CUI [1,3]
C0023759
UMLS CUI [1,4]
C0028429
UMLS CUI [1,5]
C0449788
Indicate the number of interventions the patient underwent requiring anesthesia (Alveolus)
Descripción

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 22 years REPORTING SOURCE: Administrative data TYPE: Numerical RESPONSE OPTIONS: Numerical value of interventions for palate

Tipo de datos

integer

Alias
UMLS CUI [1,1]
C0184661
UMLS CUI [1,2]
C0002903
UMLS CUI [1,3]
C0227130
UMLS CUI [1,4]
C0449788
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Similar models

Follow-up - Administrative Form

1 formularios
Name
Tipo
Description | Question | Decode (Coded Value)
Tipo de datos
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
Demographic factors
C1704791 (UMLS CUI-1)
Residence
Item
Geographic location where the patient resides, specified by country and country specific postal code.
text
C0237096 (UMLS CUI [1])
Item Group
Treatment
C0087111 (UMLS CUI-1)
Age of transfer into your institution
Item
Indicate the age of transfer into your institution
integer
C0030704 (UMLS CUI [1,1])
C0439786 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,3])
Age of transfer out of your institution
Item
Indicate the age of transfer out of your institution
integer
C0030704 (UMLS CUI [1,1])
C0439787 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,3])
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])
Item Group
Degree of health
C0018759 (UMLS CUI-1)
Number of interventions requiring anesthesia: Palate
Item
Indicate the number of interventions the patient underwent requiring anesthesia (Palate)
integer
C0184661 (UMLS CUI [1,1])
C0002903 (UMLS CUI [1,2])
C0700374 (UMLS CUI [1,3])
C0449788 (UMLS CUI [1,4])
Number of interventions requiring anesthesia: Lip and nose
Item
Indicate the number of interventions the patient underwent requiring anesthesia (Lip/Nose)
integer
C0184661 (UMLS CUI [1,1])
C0002903 (UMLS CUI [1,2])
C0023759 (UMLS CUI [1,3])
C0028429 (UMLS CUI [1,4])
C0449788 (UMLS CUI [1,5])
Number of interventions requiring anesthesia: Alveolus
Item
Indicate the number of interventions the patient underwent requiring anesthesia (Alveolus)
integer
C0184661 (UMLS CUI [1,1])
C0002903 (UMLS CUI [1,2])
C0227130 (UMLS CUI [1,3])
C0449788 (UMLS CUI [1,4])
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