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Baseline and Follow-up - Caregiver-reported

1 Formulaires  
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Patient ID
Description

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 Reporting Source: Administrative or clinical Type: Numerical Response options: According to institution

Type de données

integer

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.

Type de données

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Carer burden
Description

Carer burden

Alias
UMLS CUI-1
C2828008
UMLS CUI-2
C0085537
Question 1 of the 4-item Zarit Burden Interview, Total score
Description

As license for use of this questionaire is not certain at the moment, only the total score will be included in this version of the standard set. Inclusion Criteria: All patients Timing: Baseline and annually Reporting Source: Caregiver-reported Type: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C2828008
UMLS CUI [1,2]
C0085537
UMLS CUI [1,3]
C0021822
Question 2 of the 4-item Zarit Burden Interview, Total score
Description

As license for use of this questionaire is not certain at the moment, only the total score will be included in this version of the standard set. Inclusion Criteria: All patients Timing: Baseline and annually Reporting Source: Caregiver-reported Type: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C2828008
UMLS CUI [1,2]
C0085537
UMLS CUI [1,3]
C0021822
Question 3 of the 4-item Zarit Burden Interview, Total score
Description

As license for use of this questionaire is not certain at the moment, only the total score will be included in this version of the standard set. Inclusion Criteria: All patients Timing: Baseline and annually Reporting Source: Caregiver-reported Type: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C2828008
UMLS CUI [1,2]
C0085537
UMLS CUI [1,3]
C0021822
Question 4 of the 4-item Zarit Burden Interview, Total score
Description

By creating this item the "sample questionnaire" of ICHOM has been taken as basis (in the originial standard set this item is scheduled for the Patient form). As license for use of this questionaire is not certain at the moment, only the total score will be included in this version of the standard set. Inclusion Criteria: All patients Timing: Baseline and annually Reporting Source: Patient-reported Type: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C2828008
UMLS CUI [1,2]
C0085537
UMLS CUI [1,3]
C0021822
Place of death
Description

Place of death

Alias
UMLS CUI-1
C0421611
Please indicate whether you believe your relative died in their place of preference?
Description

By creating this item the "sample questionnaire" of ICHOM has been taken as basis (in the originial standard set this item is scheduled for the Clinical form). Inclusion Criteria: Carers whose patient has died Timing: Baseline, Annually Reporting Source: Clinical Type: Single answer

Type de données

integer

Alias
UMLS CUI [1,1]
C0011065
UMLS CUI [1,2]
C0421611
UMLS CUI [1,3]
C0558295
UMLS CUI [1,4]
C0680844
UMLS CUI [1,5]
C0080103
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Similar models

Baseline and Follow-up - Caregiver-reported

1 Formulaires
Name
Type
Description | Question | Decode (Coded Value)
Type de données
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Patient ID
integer
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
Carer burden
C2828008 (UMLS CUI-1)
C0085537 (UMLS CUI-2)
Question 1 of the 4-item Zarit Burden Interview, Total score
Item
Question 1 of the 4-item Zarit Burden Interview, Total score
integer
C2828008 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
C0021822 (UMLS CUI [1,3])
Question 2 of the 4-item Zarit Burden Interview, Total score
Item
Question 2 of the 4-item Zarit Burden Interview, Total score
integer
C2828008 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
C0021822 (UMLS CUI [1,3])
Question 3 of the 4-item Zarit Burden Interview, Total score
Item
Question 3 of the 4-item Zarit Burden Interview, Total score
integer
C2828008 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
C0021822 (UMLS CUI [1,3])
Question 4 of the 4-item Zarit Burden Interview, Total score
Item
Question 4 of the 4-item Zarit Burden Interview, Total score
integer
C2828008 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
C0021822 (UMLS CUI [1,3])
Item Group
Place of death
C0421611 (UMLS CUI-1)
Item
Please indicate whether you believe your relative died in their place of preference?
integer
C0011065 (UMLS CUI [1,1])
C0421611 (UMLS CUI [1,2])
C0558295 (UMLS CUI [1,3])
C0680844 (UMLS CUI [1,4])
C0080103 (UMLS CUI [1,5])
Whether the patient died in their preferred place
Code List
Please indicate whether you believe your relative died in their place of preference?
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
No (2)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (3)
C0439673 (UMLS CUI-1)
(Comment:en)
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