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5, 12 years old patient - Clinical-reported

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: Patients with craniofacial microsomia TIMING: On all forms REPORTING SOURCE: Administrative data RESPONSE OPTIONS: According to institution

Data type

integer

Alias
UMLS CUI [1]
C1269815
Age
Description

Note: this item does not exist in the original form. As this form has to be filled in if the subject ist 5 and 12 yearas old, please note for which age you'll fill in this form.

Data type

integer

Alias
UMLS CUI [1]
C0001779
Patient characteristics
Description

Patient characteristics

Alias
UMLS CUI-1
C0815172
Please calculate Asymmetry score?
Description

Supporting Definition: Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: All time points Reporting source: Clinician-reported Type: Numerical value Response option: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0376634
UMLS CUI [1,3]
C0332514
Family characteristics and community environment
Description

Family characteristics and community environment

Alias
UMLS CUI-1
C1521970
UMLS CUI-2
C0015576
UMLS CUI-3
C0563116
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source:Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C1518988
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C4696991
Indicate if the patient has been transferred to your institution after care was begun elsewhere
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0184681
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0439787
Hearing
Description

Hearing

Alias
UMLS CUI-1
C0018767
Does the patient need a hearing aid?
Description

Only to fill in for 5 years old patients. Inclusion criteria: Patients with craniofacial microsomia Timing: 2,5 years Reporting Source: Clinician-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0018768
Has the patient had a surgically fitted BAHA?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0543467
UMLS CUI [1,2]
C3881509
Audiogram (bone conduction and air conduction; right ear and left ear, with and without aiding)
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12, 22 years Reporting Source: Clinician-reported Type: Numerical value; dB Response option: Free text

Data type

text

Measurement units
  • dB
Alias
UMLS CUI [1]
C0004286
dB
Speech
Description

Speech

Alias
UMLS CUI-1
C0037817
Indicate the percent consonants
Description

SUPPORTING DEFINITION: Speech assessment material can be found at https://clispi.org/node/15 Definition of Normal/ Not Normal: 5 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <91%) 12 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <95%) 22 years: Normal (-1 s.d.) Not normal (<-1 s.d. = <98%) INCLUSION CRITERIA: Patients with craniofacial microsomia TIMING: 5, 12, 22 years REPORTING SOURCE: Clinician-reported RESPONSE OPTIONS: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C0439165
UMLS CUI [1,2]
C0871699
UMLS CUI [1,3]
C2349182
Oral health
Description

Oral health

Alias
UMLS CUI-1
C0029162
Indicate the number of decayed deciduous (pediatric) teeth
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of decayed teeth

Data type

integer

Alias
UMLS CUI [1,1]
C0226984
UMLS CUI [1,2]
C0018759
UMLS CUI [2,1]
C0429160
UMLS CUI [2,2]
C3266841
Indicate the number of missing deciduous (pediatric) teeth
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of missing teeth

Data type

integer

Alias
UMLS CUI [1,1]
C0226984
UMLS CUI [1,2]
C0018759
UMLS CUI [2,1]
C0429158
UMLS CUI [2,2]
C3266841
Indicate the number of filled deciduous (pediatric) teeth
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 12 years Reporting Source: Clinician-reported Type: Single answer Response option: Numerical value of filled teeth

Data type

integer

Alias
UMLS CUI [1,1]
C0226984
UMLS CUI [1,2]
C0018759
UMLS CUI [2,1]
C3266841
UMLS CUI [2,2]
C0449788
UMLS CUI [2,3]
C0457651
Appearance
Description

Appearance

Alias
UMLS CUI-1
C0700364
Phenotypic Assessment Tool questionnaire
Description

As a license agreement is needed for use of the PAT-CFM, the actual 13 (26) questions are not part of this version of the standard set. ICHOM OID's are: PATCFM_Q01 to PATCFM_Q13, each question is devided into an A and B version (e.g. PATCFM_Q01A, PATCFM_Q01B). Inclusion criteria: Patients with craniofacial microsomia Timing: 5, 8 , 12, 22 years Reporting Source: Clinician-reported Type: Multiple answers

Data type

text

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C1516048
UMLS CUI [1,3]
C0376634
UMLS CUI [1,4]
C0034394
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Similar models

5, 12 years old patient - Clinical-reported

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
integer
C1269815 (UMLS CUI [1])
Item
Age
integer
C0001779 (UMLS CUI [1])
Age
Code List
Age
CL Item
5 years old (1)
CL Item
12 years old (2)
Item Group
Patient characteristics
C0815172 (UMLS CUI-1)
Phenotype: Asymmetry
Item
Please calculate Asymmetry score?
integer
C0031437 (UMLS CUI [1,1])
C0376634 (UMLS CUI [1,2])
C0332514 (UMLS CUI [1,3])
Item Group
Family characteristics and community environment
C1521970 (UMLS CUI-1)
C0015576 (UMLS CUI-2)
C0563116 (UMLS CUI-3)
Item
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
integer
C1302313 (UMLS CUI [1,1])
C1518988 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
integer
C1302313 (UMLS CUI [1,1])
C4696991 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred to your institution after care was begun elsewhere
integer
C0030704 (UMLS CUI [1,1])
C0184681 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has been transferred to your institution after care was begun elsewhere
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
integer
C0030704 (UMLS CUI [1,1])
C0439787 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item Group
Hearing
C0018767 (UMLS CUI-1)
Item
Does the patient need a hearing aid?
integer
C0018768 (UMLS CUI [1])
BAHA
Code List
Does the patient need a hearing aid?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes, right (1)
C1705108 (UMLS CUI-1)
C0205090 (UMLS CUI-2)
(Comment:en)
CL Item
Yes, left (2)
C1705108 (UMLS CUI-1)
C0205091 (UMLS CUI-2)
(Comment:en)
Item
Has the patient had a surgically fitted BAHA?
integer
C0543467 (UMLS CUI [1,1])
C3881509 (UMLS CUI [1,2])
BAHA
Code List
Has the patient had a surgically fitted BAHA?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes, right (1)
C1705108 (UMLS CUI-1)
C0205090 (UMLS CUI-2)
(Comment:en)
CL Item
Yes, left (2)
C1705108 (UMLS CUI-1)
C0205091 (UMLS CUI-2)
(Comment:en)
Audiogram
Item
Audiogram (bone conduction and air conduction; right ear and left ear, with and without aiding)
text
C0004286 (UMLS CUI [1])
Item Group
Speech
C0037817 (UMLS CUI-1)
Item
Indicate the percent consonants
integer
C0439165 (UMLS CUI [1,1])
C0871699 (UMLS CUI [1,2])
C2349182 (UMLS CUI [1,3])
Percent consonants
Code List
Indicate the percent consonants
CL Item
Normal (1)
C0205307 (UMLS CUI-1)
(Comment:en)
CL Item
Not normal (2)
C1298908 (UMLS CUI-1)
C0205307 (UMLS CUI-2)
(Comment:en)
Item Group
Oral health
C0029162 (UMLS CUI-1)
dmft: overall dental health: decayed
Item
Indicate the number of decayed deciduous (pediatric) teeth
integer
C0226984 (UMLS CUI [1,1])
C0018759 (UMLS CUI [1,2])
C0429160 (UMLS CUI [2,1])
C3266841 (UMLS CUI [2,2])
dmft: overall dental health: missing
Item
Indicate the number of missing deciduous (pediatric) teeth
integer
C0226984 (UMLS CUI [1,1])
C0018759 (UMLS CUI [1,2])
C0429158 (UMLS CUI [2,1])
C3266841 (UMLS CUI [2,2])
dmft: overall dental health: filled
Item
Indicate the number of filled deciduous (pediatric) teeth
integer
C0226984 (UMLS CUI [1,1])
C0018759 (UMLS CUI [1,2])
C3266841 (UMLS CUI [2,1])
C0449788 (UMLS CUI [2,2])
C0457651 (UMLS CUI [2,3])
Item Group
Appearance
C0700364 (UMLS CUI-1)
Phenotypic Assessment Tool questionnaire
Item
Phenotypic Assessment Tool questionnaire
text
C0031437 (UMLS CUI [1,1])
C1516048 (UMLS CUI [1,2])
C0376634 (UMLS CUI [1,3])
C0034394 (UMLS CUI [1,4])
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