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Pre-Intervention - Patient 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
Time Relative to Baseline
Description

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.

Data type

text

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

Degree of Health

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

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

Data type

integer

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

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

Data type

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?
Description

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

Data type

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?
Description

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

Data type

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?
Description

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

Data type

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?
Description

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

Data type

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.
Description

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

Data type

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.
Description

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

Data type

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.
Description

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

Data type

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
Description

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

Data type

integer

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

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

Data type

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?
Description

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

Data type

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?
Description

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

Data type

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?
Description

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

Data type

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?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C3476649
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Similar models

Pre-Intervention - Patient 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])
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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