ID

40613

Description

ICHOM Dementia data collection Version 1.0.1 Revised: April 3rd, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Dementia, the following conditions are covered by the Standard Set. Condition: Alzheimer’s disease | Vascular dementia | Dementia in other diseases classified elsewhere (e.g. dementia with Lewy bodies and fronto-temporal dementia) Stages: Early | Middle | Late This document contains the 6-monthly - Patient/Proxy-Reported Form. It has to be filled in 6-monthly, in between the annual patient-/proxy-reported form and parallel to the annual patient-/proxy-reported form. Collecting Clinician and Patient-Reported Outcome Measures: Neuropsychiatric Inventory (NPI). Copyrighted, fees only for industry-sponsored research. No republishing without permission of the originator (JL Cummings, 1994). Therefore (for now) only the total score will be included in this version of the standard set. Bristol Activity Daily Living Scale (BADLS). As redistribution possibility is not yet cleared, for now only the total score will be included in this version of the standard set. Quality of Life-AD (QOL-AD). Use of the scale in clinical practice or by academic users is free as long as no funding is received from commercial users, however a license is required. Therefore only the total score score will be included in this version of the standard set. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of Life in Alzheimer’s disease: Patient and Caregiver Reports. Journal of Mental Health and Aging. 1999;5(1):21-32 Quality of Wellbeing Scale-Self Administered (QWB-SA). The QWB-SA may be used free of charge by non-profit organizations that provide evidence of their non-profit status and agree to provide a copy of relevant, non-identifiable project data with UCSD; Scoring instructions are provided free of charge after a signed copyright agreement is received. As https://hoap.ucsd.edu/qwb-info/NotforProfit-Copyright.pdf is the official permission site, only the total score score will be included in this version of the standard set. EuroQol-5D (EQ-5D). As a license is required for use this questionaire, only the total score will be included in this version of the standard set. Veterans RAND 12 (VR-12). As this questionaire is copyrighted and needs an user agreement for use, only the total score score will be included in this version of the standard set. Clinical Dementia Rating (CDR). This questionaire is Copyrighted.The Washington University The Charles F. and Joanne Knight Alzheimer’s Disease Research Center (Knight ADRC) holds the United States Copyright for the Clinical Dementia Rating (CDR). Therefore only the total score score will be included in this version of the standard set. Montreal Cognitive Assessment (MoCA copyrighted). For clinical and educational use, MoCA© may be used, reproduced, and distributed without permission. For this Standard set ICHOM was supported by the Scottish Government. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Keywords

Versions (3)
  1. 6/5/19 6/5/19 -
  2. 6/6/19 6/6/19 - Sarah Riepenhausen
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

DOI

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License

Creative Commons BY-NC 4.0
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ICHOM Dementia

English

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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