ID

32846

Description

HEART FAILURE DATA COLLECTION Version 1.1.4 Revised October 31st, 2017 www.ichom.org Conditions: Heart Failure Treatment Approaches: Pharmacotherapy | Invasive Therapy | Rehabilitation This ODM-file contains patient-reported outcome variables. It should be tracked 6-monthly for life, starting 30 days and 6 months post-index event. The collection rhythm has to be reset after an acute admission (including complications), starting anew at 30 days post-discharge and 6 months post-hospital admission, and tracked 6-monthly from then on. Use of the following Scores for this standard set: KCCQ-12: Kansas City Cardiomyopathy Questionnaire-Short Version: You can obtain a license to use this instrument at your institution by visiting http://cvoutcomes.org/licenses NYHA – New York Heart Association Functional Classification: The NYHA is free for all health care organizations, and a license is not needed. PROMIS Physical Function Short Form 4a – Patient-Reported Outcome Measurement Information System: PROMIS Physical Function is free for all health care organizations, and a license is not needed. For more information, please visit http://www.healthmeasures.net/explore-measurement-systems/promis/obtain-administer-measures . As http://www.nihpromis.org/ is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Patient Health Questionnaire (PHQ-2): Copyright by Pfizer: "content found on the PHQ Screeners site is free for download and use as stated within the PHQ Screeners site, please visit http://www.phqscreeners.com/ for more information. ICHOM was supported by GIG Cymru NHS Wales, American Heart Association, British Heart Foundation, Heart Failure Association of the ESC and European Society of Cardiology.

Link

www.ichom.org

Keywords

  1. 11/16/18 11/16/18 - Sarah Riepenhausen
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

November 16, 2018

DOI

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License

Creative Commons BY-NC 3.0

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ICHOM Heart Failure

Patient-reported Outcome

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

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline (e.g. 30 days after index event, 6 months follow-up, 1 year follow-up, ...)
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_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), 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
Please complete the KCCQ12 and provide the total score.
Description

As a license has to be obtained for use of KCCQ12, the questionnaire is not included in this version of the standard set. ICHOM IDs for the question look like this: KCCQ12_Qo1a to KCCQ12_Qo8c . INCLUSION CRITERIA: All patients TIMING: Tracked ongoing REPORTING SOURCE: Patient-reported TYPE: Numerical (Single Answer in the original)

Data type

integer

Alias
UMLS CUI [1,1]
C2964552
UMLS CUI [1,2]
C4533771
Please complete the PROMIS Physical Function - Short Form 4a and provide the total score.
Description

As nihpromis.org is the official distribution site for PROMIS scores, the questionnaire is not included in this version of the standard set. ICHOM IDs are PROMIS_QPFA11, PROMIS_QPFA21, PROMIS_QPFA23 and PROMIS_QPFA53. INCLUSION CRITERIA: All patients TIMING: Tracked ongoing REPORTING SOURCE: Patient-reported TYPE: Numerical (Single Answer in the original)

Data type

integer

Alias
UMLS CUI [1]
C4019234
Over the past 2 weeks, how often have you been bothered by any of the following problems: Little interest or pleasure in doing things
Description

INCLUSION CRITERIA: All patients TIMING: Tracked ongoing except at acute admissions REPORTING SOURCE: Patient-reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C2706101
UMLS CUI [1,2]
C1522634
UMLS CUI [1,3]
C0205435
Over the past 2 weeks, how often have you been bothered by any of the following problems: Feeling down, depressed or hopeless
Description

INCLUSION CRITERIA: All patients TIMING: Tracked ongoing except at acute admissions REPORTING SOURCE: Patient-reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1,1]
C2706101
UMLS CUI [1,2]
C1522634
UMLS CUI [1,3]
C0205436
Burden of Care
Description

Burden of Care

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C2828008
How hard is it for you to pay for the very basics like food, housing, medical care, and heating? Choose the statement which is most relevant
Description

INCLUSION CRITERIA: All patients TIMING: Tracked ongoing except at acute admissions REPORTING SOURCE: Patient-reported TYPE: Single Answer

Data type

integer

Alias
UMLS CUI [1]
C0516918

Similar models

Patient-reported Outcome

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])
Time Relative to Baseline
Item
Time Relative to Baseline (e.g. 30 days after index event, 6 months follow-up, 1 year follow-up, ...)
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Degree of Health
C0018759 (UMLS CUI-1)
KCCQ12 Total Score
Item
Please complete the KCCQ12 and provide the total score.
integer
C2964552 (UMLS CUI [1,1])
C4533771 (UMLS CUI [1,2])
Total Score of PROMIS Physical Function - Short Form 4a
Item
Please complete the PROMIS Physical Function - Short Form 4a and provide the total score.
integer
C4019234 (UMLS CUI [1])
Item
Over the past 2 weeks, how often have you been bothered by any of the following problems: Little interest or pleasure in doing things
integer
C2706101 (UMLS CUI [1,1])
C1522634 (UMLS CUI [1,2])
C0205435 (UMLS CUI [1,3])
Code List
Over the past 2 weeks, how often have you been bothered by any of the following problems: Little interest or pleasure in doing things
CL Item
Not at all (0)
C2984077 (UMLS CUI-1)
(Comment:en)
CL Item
Several days (1)
C3844034 (UMLS CUI-1)
(Comment:en)
CL Item
More than half the days (2)
C3828960 (UMLS CUI-1)
(Comment:en)
CL Item
Nearly every day (3)
C3845713 (UMLS CUI-1)
(Comment:en)
Item
Over the past 2 weeks, how often have you been bothered by any of the following problems: Feeling down, depressed or hopeless
integer
C2706101 (UMLS CUI [1,1])
C1522634 (UMLS CUI [1,2])
C0205436 (UMLS CUI [1,3])
Code List
Over the past 2 weeks, how often have you been bothered by any of the following problems: Feeling down, depressed or hopeless
CL Item
Not at all (0)
C2984077 (UMLS CUI-1)
(Comment:en)
CL Item
Several days (1)
C3844034 (UMLS CUI-1)
(Comment:en)
CL Item
More than half the days (2)
C3828960 (UMLS CUI-1)
(Comment:en)
CL Item
Nearly every day (3)
C3845713 (UMLS CUI-1)
(Comment:en)
Item Group
Burden of Care
C0087111 (UMLS CUI-1)
C2828008 (UMLS CUI-2)
Item
How hard is it for you to pay for the very basics like food, housing, medical care, and heating? Choose the statement which is most relevant
integer
C0516918 (UMLS CUI [1])
Code List
How hard is it for you to pay for the very basics like food, housing, medical care, and heating? Choose the statement which is most relevant
CL Item
Very hard (0)
C3842677 (UMLS CUI-1)
(Comment:en)
CL Item
Somewhat hard (1)
C4050071 (UMLS CUI-1)
(Comment:en)
CL Item
Not hard at all (2)
C3845941 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)

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