ID

40650

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/ 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 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 Baseline - Parent-reported Form. It has to be filled in at Patient's first encounter/visit. Most of the items only has to be filled in for patient <8 years. If the patient is >8 years the document "Pre-Intervention/Several documents - Patient Form" can be used additionally. 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. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Keywords

Versions (2)
  1. 8/27/19 8/27/19 -
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

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License

Creative Commons BY-NC 4.0
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ICHOM Paediatric Facial Palsy

English

Baseline - Parent-reported 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
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

text

Measurement units
  • years
Alias
UMLS CUI [1]
C0001779
years
Indicate the patient’s sex at birth
Description

Inclusion Criteria: All patients Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical, parent-reported, or patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0079399
Please indicate the highest level of schooling completed by either parent (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030551
UMLS CUI [1,2]
C0013658
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
Degree of Health
Description

Degree of Health

Alias
UMLS CUI-1
C0018759
Food falls out my child's mouth when they eat, more than I would expect for their age
Description

Inclusion Criteria: Age <8y Timing: Baseline, Pre-Intervention,Post-Intervention, 5 and 11 ages Follow-up, End of study Data Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0332307
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C4062836
UMLS CUI [2,3]
C0439093
UMLS CUI [2,4]
C0679138
Liquid falls out of my child's mouth when they drink, more than I would expect for their age
Description

Inclusion Criteria: Age <8y Timing: Baseline, Pre-Intervention,Post-Intervention, 5 and 11 ages Follow-up, End of study Data Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0332307
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C4062836
UMLS CUI [2,3]
C0302908
UMLS CUI [2,4]
C0439093
UMLS CUI [2,5]
C0679138
My child is has trouble chewing food
Description

Inclusion Criteria: Age <8y Timing: Baseline, Pre-Intervention,Post-Intervention, 5 and 11 ages Follow-up, End of study Data Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0332307
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C1299586
UMLS CUI [2,3]
C0518499
My child bites their cheeks a lot
Description

Inclusion Criteria: Age <8y Timing: Baseline, Pre-Intervention,Post-Intervention, 5 and 11 ages Follow-up, End of study Data Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0332307
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0233625
UMLS CUI [2,3]
C0332183
PROMIS Paediatric Global Health
Description

As there is an official distribution site, the actual 7 questions of this questionnaire are not included in this version of the standard set. ICHOM's OIDs are: PROMIS-PPGH7_Q01 to PROMIS-PPGH7_Q07 Inclusion Criteria: Age 4-7 (if the patient is unable to respond to PROMIS CPGH7) Timing: Baseline, Pre-Intervention, Post-Intervention, 5 and 11 ages Follow-up , End of study Data Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C3836333
UMLS CUI [1,2]
C0030755
UMLS CUI [1,3]
C2964552
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Similar models

Baseline - Parent-reported 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])
Item Group
Patient Demographic Factors
C1704791 (UMLS CUI-1)
Age
Item
Indicate the age at each clinical evaluation
text
C0001779 (UMLS CUI [1])
Item
Indicate the patient’s sex at birth
integer
C0079399 (UMLS CUI [1])
Sex at birth
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)
Item
Please indicate the highest level of schooling completed by either parent (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])
Parent education
Code List
Please indicate the highest level of schooling completed by either parent (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
Early Childhood Education (1)
C0681404 (UMLS CUI-1)
(Comment:en)
CL Item
Primary Education (2)
C0013658 (UMLS CUI-1)
C0033145 (UMLS CUI-2)
(Comment:en)
CL Item
Lower Secondary Education (3)
C0441994 (UMLS CUI-1)
C0557289 (UMLS CUI-2)
(Comment:en)
CL Item
Upper Secondary Education (4)
C0036530 (UMLS CUI-1)
(Comment:en)
CL Item
Short-Cycle Tertiary Education (5)
C0557291 (UMLS CUI-1)
(Comment:en)
CL Item
Bachelor's or Equivalent Level (6)
C1511035 (UMLS CUI-1)
C0205163 (UMLS CUI-2)
(Comment:en)
CL Item
Master's or Equivalent Level (7)
C1513010 (UMLS CUI-1)
C0205163 (UMLS CUI-2)
(Comment:en)
CL Item
Doctoral or Equivalent Level (8)
C1512027 (UMLS CUI-1)
C0205163 (UMLS CUI-2)
(Comment:en)
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
Degree of Health
C0018759 (UMLS CUI-1)
Item
Food falls out my child's mouth when they eat, more than I would expect for their age
integer
C1457887 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
C0008059 (UMLS CUI [2,1])
C4062836 (UMLS CUI [2,2])
C0439093 (UMLS CUI [2,3])
C0679138 (UMLS CUI [2,4])
Oral symptoms question 1
Code List
Food falls out my child's mouth when they eat, more than I would expect for their age
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Liquid falls out of my child's mouth when they drink, more than I would expect for their age
integer
C1457887 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
C0008059 (UMLS CUI [2,1])
C4062836 (UMLS CUI [2,2])
C0302908 (UMLS CUI [2,3])
C0439093 (UMLS CUI [2,4])
C0679138 (UMLS CUI [2,5])
Oral symptoms question 1
Code List
Liquid falls out of my child's mouth when they drink, more than I would expect for their age
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
My child is has trouble chewing food
integer
C1457887 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
C0008059 (UMLS CUI [2,1])
C1299586 (UMLS CUI [2,2])
C0518499 (UMLS CUI [2,3])
Oral symptoms question 1
Code List
My child is has trouble chewing food
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
My child bites their cheeks a lot
integer
C1457887 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
C0008059 (UMLS CUI [2,1])
C0233625 (UMLS CUI [2,2])
C0332183 (UMLS CUI [2,3])
Oral symptoms question 1
Code List
My child bites their cheeks a lot
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
PROMIS Paediatric Global Health
Item
PROMIS Paediatric Global Health
integer
C3836333 (UMLS CUI [1,1])
C0030755 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
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