English

2 years old patient - Parent-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
Family Stress
Description

Family Stress

Alias
UMLS CUI-1
C0015576
UMLS CUI-2
C0038435
Distress Thermometer Questionnaire
Description

As the source of the distress thermometer questions are not sure, the actual 50 questions are not part of this version of the standard set. ICHOM OID's are: DT-P_Q01 to DT-P_Q50. Inclusion criteria: Parents of patients with craniofacial microsomia Timing: 2, 5, 8, 12 years Reporting Source: Parent-reported Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0231303
UMLS CUI [1,2]
C0034394
Airway and Breathing
Description

Airway and Breathing

Alias
UMLS CUI-1
C0458827
UMLS CUI-2
C0035203
Does your child presently require a tracheostomy?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0521116
UMLS CUI [1,3]
C1514873
UMLS CUI [1,4]
C0040590
Does your child presently require a prong (nasopharyngeal airway)?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0521116
UMLS CUI [1,3]
C0750528
UMLS CUI [1,4]
C1514873
UMLS CUI [1,5]
C0150683
Has your child/have you required surgery on their/your jaw for their/your airway?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0407713
UMLS CUI [1,2]
C0008059
Does your child/do you require airway support when sleeping – CPAP?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0199451
UMLS CUI [1,2]
C0037313
UMLS CUI [1,3]
C0008059
Has the patient had surgery for the airway?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting source: Patient/parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0458827
UMLS CUI [1,2]
C0543467
UMLS CUI [1,3]
C0008059
Feeding and Swallowing
Description

Feeding and Swallowing

Alias
UMLS CUI-1
C2987508
UMLS CUI-2
C0011167
Does your child presently require a nasogastric feeding tube?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0521116
UMLS CUI [1,3]
C1514873
UMLS CUI [1,4]
C0192456
Has your child required a surgically placed feeding tube?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0521116
UMLS CUI [1,3]
C1514873
UMLS CUI [1,4]
C0041281
UMLS CUI [1,5]
C0543467
Does your child presently require their liquids/food to be thickened to be safe to swallow?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0521116
UMLS CUI [1,3]
C1514873
UMLS CUI [1,4]
C0302908
UMLS CUI [1,5]
C0205400
UMLS CUI [1,6]
C0589275
UMLS CUI [2,1]
C0008059
UMLS CUI [2,2]
C0521116
UMLS CUI [2,3]
C1514873
UMLS CUI [2,4]
C0016452
UMLS CUI [2,5]
C0205400
UMLS CUI [2,6]
C0589275
Does the patient regularly aspirate their food/feeds?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0449581
UMLS CUI [1,3]
C0232071
Hearing
Description

Hearing

Alias
UMLS CUI-1
C0018767
How many times has your child had an ear infection (otitis media) in the last 12 months?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Patient/parent-reported Type: Numerical value; Integer (≥0) Response option: Free text

Data type

text

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C0029882
UMLS CUI [1,3]
C0750480
UMLS CUI [1,4]
C4086728
Vision
Description

Vision

Alias
UMLS CUI-1
C0042789
Does your child have difficulty with their vision?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Patient/parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C3665347
Does your child require ointment to protect their eyes?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Patient/parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C1514873
UMLS CUI [1,3]
C0028912
UMLS CUI [1,4]
C0455242
Has your child required surgery on their eyes?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Patient/parent-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0008059
UMLS CUI [1,2]
C1514873
UMLS CUI [1,3]
C0038901
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Similar models

2 years old patient - Parent-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 Group
Family Stress
C0015576 (UMLS CUI-1)
C0038435 (UMLS CUI-2)
Distress Thermometer Questionnaire
Item
Distress Thermometer Questionnaire
text
C0231303 (UMLS CUI [1,1])
C0034394 (UMLS CUI [1,2])
Item Group
Airway and Breathing
C0458827 (UMLS CUI-1)
C0035203 (UMLS CUI-2)
Item
Does your child presently require a tracheostomy?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0040590 (UMLS CUI [1,4])
Jaw surgery
Code List
Does your child presently require a tracheostomy?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child presently require a prong (nasopharyngeal airway)?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C0750528 (UMLS CUI [1,3])
C1514873 (UMLS CUI [1,4])
C0150683 (UMLS CUI [1,5])
Jaw surgery
Code List
Does your child presently require a prong (nasopharyngeal airway)?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has your child/have you required surgery on their/your jaw for their/your airway?
integer
C0407713 (UMLS CUI [1,1])
C0008059 (UMLS CUI [1,2])
Jaw surgery
Code List
Has your child/have you required surgery on their/your jaw for their/your airway?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child/do you require airway support when sleeping – CPAP?
integer
C0199451 (UMLS CUI [1,1])
C0037313 (UMLS CUI [1,2])
C0008059 (UMLS CUI [1,3])
Jaw surgery
Code List
Does your child/do you require airway support when sleeping – CPAP?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has the patient had surgery for the airway?
integer
C0458827 (UMLS CUI [1,1])
C0543467 (UMLS CUI [1,2])
C0008059 (UMLS CUI [1,3])
Jaw surgery
Code List
Has the patient had surgery for the airway?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item Group
Feeding and Swallowing
C2987508 (UMLS CUI-1)
C0011167 (UMLS CUI-2)
Item
Does your child presently require a nasogastric feeding tube?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0192456 (UMLS CUI [1,4])
Jaw surgery
Code List
Does your child presently require a nasogastric feeding tube?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has your child required a surgically placed feeding tube?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0041281 (UMLS CUI [1,4])
C0543467 (UMLS CUI [1,5])
Jaw surgery
Code List
Has your child required a surgically placed feeding tube?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child presently require their liquids/food to be thickened to be safe to swallow?
integer
C0008059 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C1514873 (UMLS CUI [1,3])
C0302908 (UMLS CUI [1,4])
C0205400 (UMLS CUI [1,5])
C0589275 (UMLS CUI [1,6])
C0008059 (UMLS CUI [2,1])
C0521116 (UMLS CUI [2,2])
C1514873 (UMLS CUI [2,3])
C0016452 (UMLS CUI [2,4])
C0205400 (UMLS CUI [2,5])
C0589275 (UMLS CUI [2,6])
Jaw surgery
Code List
Does your child presently require their liquids/food to be thickened to be safe to swallow?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does the patient regularly aspirate their food/feeds?
integer
C0008059 (UMLS CUI [1,1])
C0449581 (UMLS CUI [1,2])
C0232071 (UMLS CUI [1,3])
Jaw surgery
Code List
Does the patient regularly aspirate their food/feeds?
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)
Otitis media
Item
How many times has your child had an ear infection (otitis media) in the last 12 months?
text
C0008059 (UMLS CUI [1,1])
C0029882 (UMLS CUI [1,2])
C0750480 (UMLS CUI [1,3])
C4086728 (UMLS CUI [1,4])
Item Group
Vision
C0042789 (UMLS CUI-1)
Item
Does your child have difficulty with their vision?
integer
C0008059 (UMLS CUI [1,1])
C3665347 (UMLS CUI [1,2])
Jaw surgery
Code List
Does your child have difficulty with their vision?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Does your child require ointment to protect their eyes?
integer
C0008059 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0028912 (UMLS CUI [1,3])
C0455242 (UMLS CUI [1,4])
Jaw surgery
Code List
Does your child require ointment to protect their eyes?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Has your child required surgery on their eyes?
integer
C0008059 (UMLS CUI [1,1])
C1514873 (UMLS CUI [1,2])
C0038901 (UMLS CUI [1,3])
Jaw surgery
Code List
Has your child required surgery on their eyes?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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