ID

37727

Description

ICHOM Paediatric Facial Palsy data collection Version 1.0.0 Revised: August 31st, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Paediatric Facial Palsy, the following conditions and treatment approaches (or interventions) are covered by ICHOM‘s Standard Set. Conditions: Congenital/Syndromic | Acquired Unilateral (single- and multi-territory) | Bilateral (single- and multi-territory) Treatment approaches: Medical treatment | Surgery | Eye care Physiotherapy/Occupational therapy | Botulinum toxin | Psychological support This document contains the End of study - Clinical Form. It should be completed at the end of paediatric care (16y to 18y) or when no further treatments are planned, and allow for >1 year follow-up. Collecting Patient-Reported Outcome Measure: eFACE – Clinician. For more information see: Banks CA, Bhama PK, Park J, Hadlock CR, Hadlock TA. Clinician-Graded Electronic Facial Paralysis Assessment: The eFACE, August 2015. doi: 10.1097/PRS.0000000000001447 FACE-Q Kids. As there is a license for use of this questionnaire, the questions will not be included in this version of the standard set, only subscores. Snellen Chart – Clinician. PROMIS Paediatric Global Health 7 and PROMIS Pediatric Peer Relationships SF 8a. As there is an official distribution site, only the total score of these questionnaires will be included in this version of the standard set. For more information see: http://www. healthmeasures.net/explore-measurement-systems/promis/ obtain-administer-measures Reference: Butler DP, De la Torre A, Borschel GH, et al. An International Collaborative Standardizing Patient-Centered Outcome Measures in Pediatric Facial Palsy. JAMA Facial Plast Surg. Published online May 09, 2019. doi:10.1001/jamafacial.2019.0224 The Standard set of ICHOM was supported by the royal free charity and the Dianne and Michael Bienes Charitable Foundation Inc.

Link

http://www.ichom.org/

Keywords

Versions (4)
  1. 8/20/19 8/20/19 -
  2. 8/20/19 8/20/19 -
  3. 8/28/19 8/28/19 -
  4. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

August 20, 2019

DOI

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License

Creative Commons BY-NC 3.0
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ICHOM Paediatric Facial Palsy

English

End of study - Clinical 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

text

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
Patient Demographic Factors
Description

Patient Demographic Factors

Alias
UMLS CUI-1
C1704791
Indicate the age at each clinical evaluation
Description

Inclusion Criteria: All patients Timing: On all forms Data Source: Clinical, parent-reported, or patient-reported Type: Single answer Response Options: Years and fractions

Data type

integer

Alias
UMLS CUI [1]
C0001779
Indicate the patient’s insurance status
Description

Inclusion Criteria: All patients Timing: On all forms Data Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C1548070
Clinical Status
Description

Clinical Status

Alias
UMLS CUI-1
C0449440
Indicate whether spontaneous (either complete or incomplete) resolution of the facial paralysis is observed.
Description

Inclusion Criteria: All patients Timing: End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0427055
UMLS CUI [1,2]
C2699488
Indicate whether the patient has any comorbidities
Description

Inclusion Criteria: All patients Timing: On all forms Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0009488
Indicate if the patient has any of the following comorbidities 0 = No other diseases
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C1298908
UMLS CUI [2,2]
C2359476
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C3277906
UMLS CUI [3,1]
C0232164
UMLS CUI [3,2]
C1704258
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0042066
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0042066
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0424605
UMLS CUI [3]
C0851265
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0004936
UMLS CUI [3]
C0004930
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0009450
UMLS CUI [3,1]
C0040549
UMLS CUI [3,2]
C0012634
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0521362
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0521362
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 7 = Other musculoskeletal anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0026860
UMLS CUI [2,2]
C3887504
UMLS CUI [3,1]
C0026860
UMLS CUI [3,2]
C1704258
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0205394
UMLS CUI [2,2]
C0037303
UMLS CUI [2,3]
C0024947
UMLS CUI [2,4]
C1704258
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C2709248
UMLS CUI [2,2]
C1704258
UMLS CUI [3]
C1709770
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0279810
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0279810
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0205470
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0205470
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinician Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0027853
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0027853
UMLS CUI [3,2]
C3887504
Degree of Health
Description

Degree of Health

Alias
UMLS CUI-1
C0018759
Indicate who is completing the PROMs
Description

Supporting Definition: PROMs refer to patient-, parent- or proxy-reported tools Inclusion Criteria: All patients Timing: On all forms Data Source: Administrative Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4038447
Indicate the distance visual acuity measured uncorrected in the right eye
Description

Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042812
UMLS CUI [1,2]
C0183370
UMLS CUI [1,3]
C0442747
UMLS CUI [1,4]
C4072785
UMLS CUI [1,5]
C0229089
Indicate the distance visual acuity measured best corrected in the right eye
Description

Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042812
UMLS CUI [1,2]
C0183370
UMLS CUI [1,3]
C0442747
UMLS CUI [1,4]
C1690532
UMLS CUI [1,5]
C0229089
Indicate the distance visual acuity measured uncorrected in the left eye
Description

Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042812
UMLS CUI [1,2]
C0183370
UMLS CUI [1,3]
C0442747
UMLS CUI [1,4]
C4072785
UMLS CUI [1,5]
C0229090
Indicate the distance visual acuity measured best corrected in the left eye
Description

Supporting Definition: Use Snellen Chart to measure visual acuity Inclusion Criteria: Age >6y Timing: Baseline, 5 and 11 ages Follow-up, End of study Data Source: Clinician Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0042812
UMLS CUI [1,2]
C0183370
UMLS CUI [1,3]
C0442747
UMLS CUI [1,4]
C1690532
UMLS CUI [1,5]
C0229090
Indicate the severity of the facial paralysis using the eFACE composite "Smile" score
Description

Supporting Definition: Based on eFACE Inclusion Criteria: Age >3y Timing: On all forms Data Source: Clinician/Administrative data Type: Numerical value Response Options: Numerical

Data type

integer

Alias
UMLS CUI [1,1]
C3846158
UMLS CUI [1,2]
C0449820
UMLS CUI [1,3]
C0439793
UMLS CUI [1,4]
C0015469
UMLS CUI [2]
C0517048
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Similar models

End of study - Clinical 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
text
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
Patient Demographic Factors
C1704791 (UMLS CUI-1)
Age
Item
Indicate the age at each clinical evaluation
integer
C0001779 (UMLS CUI [1])
Item
Indicate the patient’s insurance status
integer
C1548070 (UMLS CUI [1])
Insurance status
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)
Item Group
Clinical Status
C0449440 (UMLS CUI-1)
Item
Indicate whether spontaneous (either complete or incomplete) resolution of the facial paralysis is observed.
integer
C0427055 (UMLS CUI [1,1])
C2699488 (UMLS CUI [1,2])
Facial palsy resolution
Code List
Indicate whether spontaneous (either complete or incomplete) resolution of the facial paralysis is observed.
CL Item
Permanent (1)
C0205355 (UMLS CUI-1)
(Comment:en)
CL Item
Resolving (2)
C1709864 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether the patient has any comorbidities
integer
C0009488 (UMLS CUI [1])
Patient Comorbidities
Code List
Indicate whether the patient has any comorbidities
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Comorbidities of paediatric patient: No other disease
Item
Indicate if the patient has any of the following comorbidities 0 = No other diseases
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C1298908 (UMLS CUI [2,1])
C2359476 (UMLS CUI [2,2])
Comorbidities of paediatric patient: Cardiac anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C3277906 (UMLS CUI [2])
C0232164 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities of paediatric patient: GU anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0042066 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0042066 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Developmental delay or learning difficulty
Item
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0424605 (UMLS CUI [2])
C0851265 (UMLS CUI [3])
Comorbidities of paediatric patient: Psychiatric or behavior disorder
Item
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0004936 (UMLS CUI [2])
C0004930 (UMLS CUI [3])
Comorbidities of paediatric patient: Infection or toxin mediated disease
Item
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0009450 (UMLS CUI [2])
C0040549 (UMLS CUI [3,1])
C0012634 (UMLS CUI [3,2])
Comorbidities of paediatric patient: GI anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0521362 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0521362 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Other musculoskeletal anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 7 = Other musculoskeletal anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0026860 (UMLS CUI [2,1])
C3887504 (UMLS CUI [2,2])
C0026860 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Other craniomaxillofacial anomalies
Item
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0205394 (UMLS CUI [2,1])
C0037303 (UMLS CUI [2,2])
C0024947 (UMLS CUI [2,3])
C1704258 (UMLS CUI [2,4])
Comorbidities of paediatric patient: Pulmonary anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C2709248 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C1709770 (UMLS CUI [3])
Comorbidities of paediatric patient: Hematological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0279810 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0279810 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Immunological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0205470 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0205470 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Neurological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0027853 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0027853 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Item Group
Degree of Health
C0018759 (UMLS CUI-1)
Item
Indicate who is completing the PROMs
integer
C4038447 (UMLS CUI [1])
Reporting source of PROM
Code List
Indicate who is completing the PROMs
CL Item
Patient (1)
C0030705 (UMLS CUI-1)
(Comment:en)
CL Item
Parent/proxy (2)
C0030551 (UMLS CUI-1)
C0600420 (UMLS CUI-2)
(Comment:en)
Visual acuity using Snellen chart, uncorrected right eye
Item
Indicate the distance visual acuity measured uncorrected in the right eye
integer
C0042812 (UMLS CUI [1,1])
C0183370 (UMLS CUI [1,2])
C0442747 (UMLS CUI [1,3])
C4072785 (UMLS CUI [1,4])
C0229089 (UMLS CUI [1,5])
Visual acuity using Snellen chart, best corrected right eye
Item
Indicate the distance visual acuity measured best corrected in the right eye
integer
C0042812 (UMLS CUI [1,1])
C0183370 (UMLS CUI [1,2])
C0442747 (UMLS CUI [1,3])
C1690532 (UMLS CUI [1,4])
C0229089 (UMLS CUI [1,5])
Visual acuity using Snellen chart, uncorrected left eye
Item
Indicate the distance visual acuity measured uncorrected in the left eye
integer
C0042812 (UMLS CUI [1,1])
C0183370 (UMLS CUI [1,2])
C0442747 (UMLS CUI [1,3])
C4072785 (UMLS CUI [1,4])
C0229090 (UMLS CUI [1,5])
Visual acuity using Snellen chart, best corrected left eye
Item
Indicate the distance visual acuity measured best corrected in the left eye
integer
C0042812 (UMLS CUI [1,1])
C0183370 (UMLS CUI [1,2])
C0442747 (UMLS CUI [1,3])
C1690532 (UMLS CUI [1,4])
C0229090 (UMLS CUI [1,5])
eFACE scoring
Item
Indicate the severity of the facial paralysis using the eFACE composite "Smile" score
integer
C3846158 (UMLS CUI [1,1])
C0449820 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
C0015469 (UMLS CUI [1,4])
C0517048 (UMLS CUI [2])
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