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Follow-up 6 years - 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
PROMIS Paediatric Physical Function - Upper Extremity Short Form, total score
Description

As there is an official distribution site, the actual 8 questions of this questionnaire are not included in this version of the standard set. The ICHOM OIDs are: PROMIS-UE_Q01 to PROMIS-UE_Q08. Supporting Definition: 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. Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C3693645
UMLS CUI [1,2]
C1140618
UMLS CUI [1,3]
C0030755
UMLS CUI [1,4]
C0516981
UMLS CUI [1,5]
C2964552
What is your overall assessment of the appearance of your hand?
Description

Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0036594
UMLS CUI [1,2]
C0282416
UMLS CUI [1,3]
C2603369
UMLS CUI [1,4]
C0018563
Do you care about what others think of your hand appearance?
Description

Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0033963
UMLS CUI [2,1]
C0037427
UMLS CUI [2,2]
C0018563
UMLS CUI [2,3]
C0700364
Do you believe the appearance of your hand could be better?
Description

Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0036594
UMLS CUI [1,2]
C2986411
UMLS CUI [1,3]
C0018563
UMLS CUI [1,4]
C0700364
Do you think your hands look asymmetrical?
Description

Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0036594
UMLS CUI [1,2]
C0018563
UMLS CUI [1,3]
C0700364
UMLS CUI [1,4]
C0332514
How has your intervention affected the appearance of your hands?
Description

Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0184661
UMLS CUI [1,2]
C0392760
UMLS CUI [1,3]
C0018563
UMLS CUI [1,4]
C0700364
PROMIS Paediatric Physical Function - Global health, total score
Description

As there is an official distribution site, the actual 7 questions of this questionnaire are not included in this version of the standard set. The ICHOM OIDs are: PROMIS-CPGH7_Q01 to PROMIS-CPGH7_Q07. Supporting Definition: 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. Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC 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
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Similar models

Follow-up 6 years - 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)
PROMIS Paediatric Physical Function - Upper Extremity Short Form, total score
Item
PROMIS Paediatric Physical Function - Upper Extremity Short Form, total score
integer
C3693645 (UMLS CUI [1,1])
C1140618 (UMLS CUI [1,2])
C0030755 (UMLS CUI [1,3])
C0516981 (UMLS CUI [1,4])
C2964552 (UMLS CUI [1,5])
Item
What is your overall assessment of the appearance of your hand?
integer
C0036594 (UMLS CUI [1,1])
C0282416 (UMLS CUI [1,2])
C2603369 (UMLS CUI [1,3])
C0018563 (UMLS CUI [1,4])
Overall Aesthetics
Code List
What is your overall assessment of the appearance of your hand?
CL Item
Poor (1)
C2700379 (UMLS CUI-1)
(Comment:en)
CL Item
Fair (2)
C2911689 (UMLS CUI-1)
(Comment:en)
CL Item
Good (3)
C0205170 (UMLS CUI-1)
(Comment:en)
CL Item
Very good (4)
C3641222 (UMLS CUI-1)
(Comment:en)
CL Item
Excellent (5)
C1961136 (UMLS CUI-1)
(Comment:en)
Item
Do you care about what others think of your hand appearance?
integer
C0033963 (UMLS CUI [1])
C0037427 (UMLS CUI [2,1])
C0018563 (UMLS CUI [2,2])
C0700364 (UMLS CUI [2,3])
Psychosocial
Code List
Do you care about what others think of your hand appearance?
CL Item
Never (1)
C2003901 (UMLS CUI-1)
(Comment:en)
CL Item
Rarely (2)
C0522498 (UMLS CUI-1)
(Comment:en)
CL Item
Sometimes (3)
C1998882 (UMLS CUI-1)
(Comment:en)
CL Item
Often (4)
C0332183 (UMLS CUI-1)
(Comment:en)
CL Item
Always (5)
C2003902 (UMLS CUI-1)
(Comment:en)
Item
Do you believe the appearance of your hand could be better?
integer
C0036594 (UMLS CUI [1,1])
C2986411 (UMLS CUI [1,2])
C0018563 (UMLS CUI [1,3])
C0700364 (UMLS CUI [1,4])
Expectations
Code List
Do you believe the appearance of your hand could be better?
CL Item
Not at all (1)
C2984077 (UMLS CUI-1)
(Comment:en)
CL Item
Somewhat (2)
C2984079 (UMLS CUI-1)
(Comment:en)
CL Item
Extremely (3)
C0205403 (UMLS CUI-1)
(Comment:en)
Item
Do you think your hands look asymmetrical?
integer
C0036594 (UMLS CUI [1,1])
C0018563 (UMLS CUI [1,2])
C0700364 (UMLS CUI [1,3])
C0332514 (UMLS CUI [1,4])
Expectations
Code List
Do you think your hands look asymmetrical?
CL Item
Not at all (1)
C2984077 (UMLS CUI-1)
(Comment:en)
CL Item
Somewhat (2)
C2984079 (UMLS CUI-1)
(Comment:en)
CL Item
Extremely (3)
C0205403 (UMLS CUI-1)
(Comment:en)
Item
How has your intervention affected the appearance of your hands?
integer
C0184661 (UMLS CUI [1,1])
C0392760 (UMLS CUI [1,2])
C0018563 (UMLS CUI [1,3])
C0700364 (UMLS CUI [1,4])
Expectations
Code List
How has your intervention affected the appearance of your hands?
CL Item
Not at all (1)
C2984077 (UMLS CUI-1)
(Comment:en)
CL Item
Somewhat (2)
C2984079 (UMLS CUI-1)
(Comment:en)
CL Item
Extremely (3)
C0205403 (UMLS CUI-1)
(Comment:en)
PROMIS Paediatric Physical Function - Global health, total score
Item
PROMIS Paediatric Physical Function - Global health, total score
integer
C3836333 (UMLS CUI [1,1])
C0030755 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
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