ID
40650
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 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.
Länk
Nyckelord
Versioner (2)
- 2019-08-27 2019-08-27 -
- 2020-04-30 2020-04-30 - Sarah Riepenhausen
Rättsinnehavare
ICHOM
Uppladdad den
30 april 2020
DOI
För en begäran logga in.
Licens
Creative Commons BY-NC 4.0
Modellkommentarer :
Här kan du kommentera modellen. Med hjälp av pratbubblor i Item-grupperna och Item kan du lägga in specifika kommentarer.
Itemgroup-kommentar för :
Item-kommentar för :
Du måste vara inloggad för att kunna ladda ner formulär. Var vänlig logga in eller registrera dig utan kostnad.
ICHOM Paediatric Facial Palsy
Baseline - Parent-reported Form
- StudyEvent: ODM
Beskrivning
Patient Demographic Factors
Alias
- UMLS CUI-1
- C1704791
Beskrivning
Inclusion Criteria: All patients Timing: On all forms Data Source: Clinical, parent-reported, or patient-reported Type: Single answer Response Options: Years and fractions
Datatyp
text
Måttenheter
- years
Alias
- UMLS CUI [1]
- C0001779
Beskrivning
Inclusion Criteria: All patients Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical, parent-reported, or patient-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1]
- C0079399
Beskrivning
Inclusion Criteria: All patients Timing: Baseline Data Source: Parent-reported Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C0030551
- UMLS CUI [1,2]
- C0013658
Beskrivning
Inclusion Criteria: All patients Timing: On all forms Data Source: Administrative data Type: Single answer
Datatyp
integer
Alias
- UMLS CUI [1]
- C1548070
Beskrivning
Degree of Health
Alias
- UMLS CUI-1
- C0018759
Beskrivning
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
Datatyp
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
Beskrivning
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
Datatyp
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
Beskrivning
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
Datatyp
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
Beskrivning
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
Datatyp
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
Beskrivning
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
Datatyp
integer
Alias
- UMLS CUI [1,1]
- C3836333
- UMLS CUI [1,2]
- C0030755
- UMLS CUI [1,3]
- C2964552
Similar models
Baseline - Parent-reported Form
- StudyEvent: ODM
(Comment:en)
(Comment:en)
(Comment:en)
C0013658 (UMLS CUI [1,2])
(Comment:en)
(Comment:en)
C0033145 (UMLS CUI-2)
(Comment:en)
C0557289 (UMLS CUI-2)
(Comment:en)
(Comment:en)
(Comment:en)
C0205163 (UMLS CUI-2)
(Comment:en)
C0205163 (UMLS CUI-2)
(Comment:en)
C0205163 (UMLS CUI-2)
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
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])
(Comment:en)
(Comment:en)
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])
(Comment:en)
(Comment:en)
C0332307 (UMLS CUI [1,2])
C0008059 (UMLS CUI [2,1])
C1299586 (UMLS CUI [2,2])
C0518499 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
C0332307 (UMLS CUI [1,2])
C0008059 (UMLS CUI [2,1])
C0233625 (UMLS CUI [2,2])
C0332183 (UMLS CUI [2,3])
(Comment:en)
(Comment:en)
C0030755 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])