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6-monthly - Patient/Proxy-Reported Form

1 forms  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Patient ID
Description

Definition: Indicate the patient's medical record number Supporting Definition: 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 Data Source: Administrative or clinical Type: Numerical Response Options: According to institution

Data type

text

Alias
UMLS CUI [1]
C2348585
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
Overall quality of life
Description

Overall quality of life

Alias
UMLS CUI-1
C0034380
UMLS CUI-2
C0034394
Dementia specific QOL (tracked via the Quality of Life-AD)
Description

Supporting Definition: QOL‐AD Inclusion Criteria: All patients Timing: Baseline and 6 monthly Data Source: Patient/caregiver reported Type: Numerical Response Options: 13‐52

Data type

integer

Alias
UMLS CUI [1,1]
C0034380
UMLS CUI [1,2]
C0497327
UMLS CUI [1,3]
C0034394
QOL - Person with Dementia, Total Score
Description

As a license is needed for use of the QOL-AD, the actual questions are not part of this version of the standard set. In the original standard set the QOL - Person with Dementia includes 13 questions. The ICHOM OID's are: QOLADPATIENT_Q01 to QOLADPATIENT_Q13 Inclusion Criteria: All patients Timing: Baseline and 6 monthly Data Source: Patient‐reported Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0034380
UMLS CUI [1,2]
C0497327
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
QOL - Family Member or Caregiver, Total Score
Description

As a license is needed for use of the QOL-AD, the actual questions are not part of this version of the standard set. In the original standard set the QOL - Family Member or Caregiver includes 13 questions. The ICHOM OID's are: QOLADRELATIVE_Q01 to QOLADRELATIVE_Q13 Inclusion Criteria: All patients Timing: Baseline and 6 monthly Data Source: Relative‐reported Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0034380
UMLS CUI [1,2]
C0497327
UMLS CUI [1,3]
C0034394
UMLS CUI [1,4]
C2964552
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Similar models

6-monthly - Patient/Proxy-Reported Form

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Patient ID
text
C2348585 (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
Overall quality of life
C0034380 (UMLS CUI-1)
C0034394 (UMLS CUI-2)
Overall quality of life and wellbeing
Item
Dementia specific QOL (tracked via the Quality of Life-AD)
integer
C0034380 (UMLS CUI [1,1])
C0497327 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
QOL - Person with Dementia, Total Score
Item
QOL - Person with Dementia, Total Score
text
C0034380 (UMLS CUI [1,1])
C0497327 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
QOL - Family Member or Caregiver, Total Score
Item
QOL - Family Member or Caregiver, Total Score
text
C0034380 (UMLS CUI [1,1])
C0497327 (UMLS CUI [1,2])
C0034394 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
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