ID

40665

Beskrivning

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 Pre-Intervention - Patient Form. It has to be filled in prior to any new treatment (any invasive or non-invasive). Valid for 6 months if multiple interventions started within this period. If patient < 8 years, please take the parentreported Form. 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.

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http://www.ichom.org/

Nyckelord

Versioner (3)
  1. 2019-08-27 2019-08-27 -
  2. 2019-09-05 2019-09-05 - Sarah Riepenhausen
  3. 2020-04-30 2020-04-30 - Sarah Riepenhausen
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30 april 2020

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ICHOM Paediatric Facial Palsy

Engelsk

Pre-Intervention - Patient Form

1 Formulär  
Administrative Data
Beskrivning

Administrative Data

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

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

Datatyp

text

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

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.

Datatyp

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Degree of Health
Beskrivning

Degree of Health

Alias
UMLS CUI-1
C0018759
Are you able to blink?
Beskrivning

Inclusion Criteria: All patients Timing: On all forms Data Source: Patient-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1]
C0586406
UMLS CUI [2,1]
C0085732
UMLS CUI [2,2]
C0005757
Can you close your eyes?
Beskrivning

Inclusion Criteria: All patients Timing: On all forms Data Source: Patient-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1]
C0586406
UMLS CUI [2,1]
C0085732
UMLS CUI [2,2]
C0509489
Do your eyes make a lot of tears when you go outside in the sun or wind?
Beskrivning

Inclusion Criteria: All patients Timing: On all forms Data Source: Patient-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1]
C0586406
UMLS CUI [2,1]
C3257803
UMLS CUI [2,2]
C1456711
UMLS CUI [3,1]
C3257803
UMLS CUI [3,2]
C0043187
Do your eyes feel dry a lot?
Beskrivning

Inclusion Criteria: All patients Timing: On all forms Data Source: Patient-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1]
C0586406
UMLS CUI [2,1]
C0036658
UMLS CUI [2,2]
C2266644
UMLS CUI [2,3]
C0314719
UMLS CUI [2,4]
C0332183
Do your eyes look red when you look at them in the mirror?
Beskrivning

Inclusion Criteria: All patients Timing: On all forms Data Source: Patient-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1]
C0586406
UMLS CUI [2,1]
C0015392
UMLS CUI [2,2]
C0332575
Do you feel you/the child have trouble with your/their speech?
Beskrivning

Inclusion Criteria: All patients Timing: Baseline, Pre-Intervention, Post-Intervention,5 and 11 ages follow-up, End of study Data Source: Patient-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1]
C0037822
On a scale of 0 to 10, with 0 being no pain at all and 10 being the worst pain imaginable, please indicate your average pain in your face over the last 7 days.
Beskrivning

Inclusion Criteria: Age >8y Timing: On all forms Data Source: Patient-reported Type: Single answer Response Options: Numeric rating scale (0 - 10) or Visual Analog Scale

Datatyp

integer

Alias
UMLS CUI [1,1]
C0030193
UMLS CUI [1,2]
C0015450
Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data.
Beskrivning

As there is a license for use of this questionnaire, the actual 15 questions are not part of this version of the standard set. ICHOMs OID's are: FACEQF_Q01 to FACEQF_Q15 Inclusion Criteria: Age 8-18 Timing: On all forms Data Source: Patient-reported

Datatyp

integer

Alias
UMLS CUI [1,1]
C0700364
UMLS CUI [1,2]
C0015450
UMLS CUI [1,3]
C0008059
UMLS CUI [1,4]
C0449820
Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data.
Beskrivning

As there is a license for use of this questionnaire, the actual 13 questions are not part of this version of the standard set. ICHOMs OID's are: FACEQMF_Q01 to FACEQMF_Q13 Inclusion Criteria: Age 8-18 Timing: Baseline, Pre-Intervention, Post-Intervention, 5 and 11 ages follow-up, End of study Data Source: Patient-reported

Datatyp

integer

Alias
UMLS CUI [1,1]
C0230028
UMLS CUI [1,2]
C0542341
UMLS CUI [1,3]
C0008059
UMLS CUI [1,4]
C0449820
PROMIS Paediatric Global Health, total score
Beskrivning

As there is an official distribution site, the actual 7 questions of this questionnaire are not part of this version of the standard set. ICHOMs OID's are: PROMIS-CPGH7_Q01 to PROMIS-CPGH7_Q07 Inclusion Criteria: Age 8-18 Timing: Baseline, Pre-Intervention, Post-Intervention, 5 and 11 ages follow-up, End of study Data Source: Patient-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C3836333
UMLS CUI [1,2]
C0030755
UMLS CUI [1,3]
C2964552
PROMIS Pediatric Peer Relationships, total score
Beskrivning

As there is an official distribution site, the actual 8 questions of this questionnaire are not part of this version of the standard set. ICHOMs OID's are: PROMIS-PEER_Q01 to PROMIS-PEER_Q08 Inclusion Criteria: Age 8-18 Timing: T0, T1, T2, TDS, TE Data Source: Patient-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C3693645
UMLS CUI [1,2]
C1521725
UMLS CUI [1,3]
C0021797
UMLS CUI [1,4]
C2964552
Have you been provided with further resources such as psychological support or care?
Beskrivning

Supporting Definition: This question is not a health outcome it is intended to identify whether patients and their families need further support to cope with the condition Inclusion Criteria: All patients Timing: Pre-Intervention Data Source: Patient or Proxy-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C0035201
UMLS CUI [1,2]
C0012634
UMLS CUI [2,1]
C0205486
UMLS CUI [2,2]
C0035201
UMLS CUI [3,1]
C0017313
UMLS CUI [3,2]
C0035201
Have you been provided adequate verbal/written information on your/your child's condition and treatment?
Beskrivning

Supporting Definition: This question is not a health outcome it is intended to identify whether patients and their families need further information to understand their condition and promote patient activation Inclusion Criteria: All patients Timing: Pre-Intervention Data Source: Patient or Proxy-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C0332118
UMLS CUI [1,2]
C0012634
UMLS CUI [2,1]
C0332118
UMLS CUI [2,2]
C0087111
Do you feel you understand your/your child's current treatment?
Beskrivning

Supporting Definition: This question is not a health outcome it is intended to identify whether patients and their families need further information to understand their condition and promote patient activation Inclusion Criteria: All patients Timing: Pre-Intervention Data Source: Patient or Proxy-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1,1]
C0162340
UMLS CUI [1,2]
C0012634
UMLS CUI [2,1]
C0162340
UMLS CUI [2,2]
C0087111
Are you happy with your/your child's overall outcome at this time?
Beskrivning

Supporting Definition: This question is not a health outcome it is intended to identify patient satisfaction and experience Inclusion Criteria: All patients Timing: Pre-Intervention Data Source: Patient or Proxy-reported Type: Single answer

Datatyp

integer

Alias
UMLS CUI [1]
C3476649
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Similar models

Pre-Intervention - Patient Form

1 Formulär
Name
Typ
Description | Question | Decode (Coded Value)
Datatyp
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
Degree of Health
C0018759 (UMLS CUI-1)
Item
Are you able to blink?
integer
C0586406 (UMLS CUI [1])
C0085732 (UMLS CUI [2,1])
C0005757 (UMLS CUI [2,2])
Ocular symptoms
Code List
Are you able to blink?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Can you close your eyes?
integer
C0586406 (UMLS CUI [1])
C0085732 (UMLS CUI [2,1])
C0509489 (UMLS CUI [2,2])
Ocular symptoms
Code List
Can you close your eyes?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Do your eyes make a lot of tears when you go outside in the sun or wind?
integer
C0586406 (UMLS CUI [1])
C3257803 (UMLS CUI [2,1])
C1456711 (UMLS CUI [2,2])
C3257803 (UMLS CUI [3,1])
C0043187 (UMLS CUI [3,2])
Ocular symptoms
Code List
Do your eyes make a lot of tears when you go outside in the sun or wind?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Do your eyes feel dry a lot?
integer
C0586406 (UMLS CUI [1])
C0036658 (UMLS CUI [2,1])
C2266644 (UMLS CUI [2,2])
C0314719 (UMLS CUI [2,3])
C0332183 (UMLS CUI [2,4])
Ocular symptoms
Code List
Do your eyes feel dry a lot?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Do your eyes look red when you look at them in the mirror?
integer
C0586406 (UMLS CUI [1])
C0015392 (UMLS CUI [2,1])
C0332575 (UMLS CUI [2,2])
Ocular symptoms
Code List
Do your eyes look red when you look at them in the mirror?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Do you feel you/the child have trouble with your/their speech?
integer
C0037822 (UMLS CUI [1])
Ocular symptoms
Code List
Do you feel you/the child have trouble with your/their speech?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Pain in face
Item
On a scale of 0 to 10, with 0 being no pain at all and 10 being the worst pain imaginable, please indicate your average pain in your face over the last 7 days.
integer
C0030193 (UMLS CUI [1,1])
C0015450 (UMLS CUI [1,2])
FACE-Q Kids Appearance of the Face, subscore
Item
Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data.
integer
C0700364 (UMLS CUI [1,1])
C0015450 (UMLS CUI [1,2])
C0008059 (UMLS CUI [1,3])
C0449820 (UMLS CUI [1,4])
FACE-Q Kids Mouth function, subscore
Item
Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data.
integer
C0230028 (UMLS CUI [1,1])
C0542341 (UMLS CUI [1,2])
C0008059 (UMLS CUI [1,3])
C0449820 (UMLS CUI [1,4])
PROMIS Paediatric Global Health, total score
Item
PROMIS Paediatric Global Health, total score
integer
C3836333 (UMLS CUI [1,1])
C0030755 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
PROMIS Pediatric Peer Relationships, total score
Item
PROMIS Pediatric Peer Relationships, total score
integer
C3693645 (UMLS CUI [1,1])
C1521725 (UMLS CUI [1,2])
C0021797 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
Item
Have you been provided with further resources such as psychological support or care?
integer
C0035201 (UMLS CUI [1,1])
C0012634 (UMLS CUI [1,2])
C0205486 (UMLS CUI [2,1])
C0035201 (UMLS CUI [2,2])
C0017313 (UMLS CUI [3,1])
C0035201 (UMLS CUI [3,2])
Resources for condition
Code List
Have you been provided with further resources such as psychological support or care?
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)
Item
Have you been provided adequate verbal/written information on your/your child's condition and treatment?
integer
C0332118 (UMLS CUI [1,1])
C0012634 (UMLS CUI [1,2])
C0332118 (UMLS CUI [2,1])
C0087111 (UMLS CUI [2,2])
Resources for condition
Code List
Have you been provided adequate verbal/written information on your/your child's condition and treatment?
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)
Item
Do you feel you understand your/your child's current treatment?
integer
C0162340 (UMLS CUI [1,1])
C0012634 (UMLS CUI [1,2])
C0162340 (UMLS CUI [2,1])
C0087111 (UMLS CUI [2,2])
Resources for condition
Code List
Do you feel you understand your/your child's current treatment?
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)
Item
Are you happy with your/your child's overall outcome at this time?
integer
C3476649 (UMLS CUI [1])
Resources for condition
Code List
Are you happy with your/your child's overall outcome at this time?
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)
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