ID

40592

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 Index event and Baseline - Clinical Form. It has to be filled in at baseline index event, e.g. Memory Clinic Diagnosis. 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. This Standard set 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

  1. 6/4/19 6/4/19 -
  2. 6/4/19 6/4/19 - 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

Index event and Baseline - Clinical Form

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
Demographic factors
Description

Demographic factors

Alias
UMLS CUI-1
C1704791
Date of birth
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical, Administrative data or patient/caregiver reported Type: Date Response Options: DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C0001779
UMLS CUI [2]
C0421451
DD/MM/YYYY
Sex at birth
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical, Administrative data or patient/caregiver reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0079399
Body mass index
Description

Supporting Definition: Height and weight are used to calculate BMI Inclusion Criteria: All patients Timing: Baseline Annually Data Source: Clinical Type: Numerical value Response Options: Numerical value of body mass index in kg/m2

Data type

float

Measurement units
  • kg/m^2
Alias
UMLS CUI [1]
C1305855
kg/m^2
Baseline Clinical Factors
Description

Baseline Clinical Factors

Alias
UMLS CUI-1
C0449440
UMLS CUI-2
C1442488
Type of dementia diagnosis and subtype using ICD classification
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical or administrative Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0332307
UMLS CUI [1,2]
C0497327
Level of dementia tracked via the Clinical Dementia Rating scale
Description

Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical or administrative Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C4718742
UMLS CUI [2]
C0451074
Associated clinical history
Description

Associated clinical history

Alias
UMLS CUI-1
C0262926
UMLS CUI-2
C0332281
Has the person with dementia sustained a traumatic brain injury prior to dementia diagnosis, classified as mild/minor, moderate or severe?
Description

Supporting Definition: As per Glasgow Coma Scale classification: GCS 13-­15: Mild/minor GCS 9-­12: Moderate GCS <9: Severe Inclusion Criteria: All patients Timing: Baseline Data Source: Clinical or administrative Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0270611
UMLS CUI [1,2]
C0332152
UMLS CUI [1,3]
C0497327
Has the person with dementia sustained a cardio-­vascular event in the previous year?
Description

Supporting Definition: Has the patient had a cardiovascular death, non­‐fatal myocardial infarction, sustained ventricular arrhythmia, any coronary intervention, hospitalization for congestive heart failure, angina requiring hospital admission, peripheral vascular or cerebrovascular event in the last year Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­reported, clinical or administrative Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1320716
UMLS CUI [1,2]
C0021149
Have you ever been told by a doctor that you have any of the following? (select all that apply) 0 = The person with dementia has no other diseases
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C1298908
Have you ever been told by a doctor that you have any of the following? (select all that apply) 1 = Heart disease (for example angina, heart attack or heart failure)
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0018799
UMLS CUI [3]
C0018801
UMLS CUI [4]
C0002962
UMLS CUI [5]
C0027051
Have you ever been told by a doctor that you have any of the following? (select all that apply) 2 = High blood pressure (sometimes referred to as 'hypertension')
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0020538
Have you ever been told by a doctor that you have any of the following? (select all that apply) 3 = Lung disease (for example asthma, chronic bronchitis or emphysema)
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0024115
UMLS CUI [3]
C0004096
UMLS CUI [4]
C0008677
UMLS CUI [5]
C0034067
Have you ever been told by a doctor that you have any of the following? (select all that apply) 4 = Leg pain when walking due to poor circulation
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C1306889
Have you ever been told by a doctor that you have any of the following? (select all that apply) 5 = Diabetes (Type I or Type II)
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0011854
UMLS CUI [3]
C0011860
Have you ever been told by a doctor that you have any of the following? (select all that apply) 6 = Kidney disease
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0022658
Have you ever been told by a doctor that you have any of the following? (select all that apply) 7 = Disease of the nervous system (for example Parkinson's disease or multiple sclerosis)
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0027765
UMLS CUI [3]
C0030567
UMLS CUI [4]
C0026769
Have you ever been told by a doctor that you have any of the following? (select all that apply) 8 = Liver disease
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0023895
Have you ever been told by a doctor that you have any of the following? (select all that apply) 9 = Cancer (within the last 5 years)
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0006826
Have you ever been told by a doctor that you have any of the following? (select all that apply) 10 = Depression before diagnosis of dementia
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0011581
UMLS CUI [2,2]
C0332152
UMLS CUI [2,3]
C0497327
Have you ever been told by a doctor that you have any of the following? (select all that apply) 11 = High cholesterol (sometimes referred to as hyperlipidemia)
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0020443
Have you ever been told by a doctor that you have any of the following? (select all that apply) 12 = Problems caused by stroke
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2,1]
C0038454
UMLS CUI [2,2]
C0678227
UMLS CUI [2,3]
C1546466
Have you ever been told by a doctor that you have any of the following? (select all that apply) 13 = Substance abuse
Description

Supporting Definition: Based upon the Self-administered Comorbidity Questionnaire (Sanga et al, 2003) Item is phrased as a patient reported measure. However, if the patient is unable to answer, this information can be abstracted from the medical records. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient/caregiver-­‐reported, clinical or administrative Type: Multiple answers

Data type

boolean

Alias
UMLS CUI [1]
C0009488
UMLS CUI [2]
C0038586
Medication variables
Description

Medication variables

Alias
UMLS CUI-1
C0013227
What is the total number of (non‐topical, and not over‐the­‐counter) medications (for dementia and/or other conditions) the person with dementia has been prescribed
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0750480
UMLS CUI [1,2]
C3166216
UMLS CUI [2,1]
C0332300
UMLS CUI [2,2]
C1522168
Indicate if the person with dementia is currently prescribed an acetylcholinesterase inhibitor
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0001046
Indicate if the person with dementia is currently prescribed a NMDA receptor antagonist
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C2916808
Indicate if the person with dementia is currently prescribed any antipsychotic drugs (also known as neuroleptics or major tranquillizers)
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0040615
Indicate if the person with dementia is currently prescribed an antidepressant
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0003289
Indicate if the person with dementia is currently prescribed an anticonvulsant medication
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0003286
Indicate if the person with dementia is currently prescribed a hypnotic
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0020591
Outcome
Description

Outcome

Alias
UMLS CUI-1
C1547647
Level of dementia (tracked via the Clinical Dementia Rating)
Description

Inclusion Criteria: All patients Timing: Baseline Annually Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0242656
UMLS CUI [2]
C4718742
UMLS CUI [3]
C0451074
Neuropsychiatric
Description

Neuropsychiatric

Alias
UMLS CUI-1
C3203509
NPI_C ‐ Delusions total score
Description

As permission for use is required, the 9 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_D, NPI_C_D1 to NPI_C_D8. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Options: Delusions (0‐24)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C0011253
UMLS CUI [1,3]
C2964552
NPI_C ‐ Hallucinations total score
Description

As permission for use is required, the 8 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_H, NPI_C_H1 to NPI_C_H7. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Option: Hallucinations (0-21)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C0018524
UMLS CUI [1,3]
C2964552
NPI_C ‐ Agitation total score
Description

As permission for use is required, the 14 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_AGI, NPI_C_AGI1 to NPI_C_AGI13. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Option: Agitation (0-39)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C0085631
UMLS CUI [1,3]
C2964552
NPI_C ‐ Aggression total score
Description

As permission for use is required, the 9 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_AGG, NPI_C_AGG1 to NPI_C_AGG8. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Option: Aggression (0-24)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C1457883
UMLS CUI [1,3]
C2964552
NPI_C ‐ Dysphoria total score
Description

As permission for use is required, the 14 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_DYS, NPI_C_DYS1 to NPI_C_DYS13. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Option: Dysphoria (0-39)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C3176492
UMLS CUI [1,3]
C2964552
NPI_C ‐ Anxiety total score
Description

As permission for use is required, the 15 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_ANX, NPI_C_ANX1 to NPI_C_ANX14. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Option: Anxiety (0-42)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C0003467
UMLS CUI [1,3]
C2964552
NPI_C ‐ Apathy/Indifference total score
Description

As permission for use is required, the 13 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_APA_IND, NPI_C_APA_IND1 to NPI_C_APA_IND12. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Option: Apathy (0-36)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C3828762
NPI_C ‐ Sleep Disorders total score
Description

As permission for use is required, the 9 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_SLEEPDIS, NPI_C_SLEEPDIS1 to NPI_C_SLEEPDIS8. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Option: Sleep (0-24)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C0851578
UMLS CUI [1,3]
C2964552
NPI_C ‐ Appetite and Eating Disorders total score
Description

As permission for use is required, the 10 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are NPI_C_APP_ EAT_DIS, NPI_C_APP_ EAT_DIS1 to NPI_C_APP_ EAT_DIS9. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Option: Appetite (0-27)

Data type

integer

Alias
UMLS CUI [1,1]
C3539727
UMLS CUI [1,2]
C0003621
UMLS CUI [1,3]
C0013473
UMLS CUI [1,4]
C2964552
Clinical Dementia Rating
Description

Clinical Dementia Rating

Alias
UMLS CUI-1
C0451074
CDR_Memory Questions for Informant total score
Description

As this questionaire is copyrighted, the 16 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are CDR_INFOR_MEM1 to CDR_INFOR_MEM15. Additionnaly the MEN1 question has a subquestion: CDR_INFOR_MEM1A Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Caregiver or Clinical Impression Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0451074
UMLS CUI [1,2]
C0025260
UMLS CUI [1,3]
C1550484
UMLS CUI [1,4]
C2964552
CDR_Orientation Questions for Informant total score
Description

As this questionaire is copyrighted, the 8 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are CDR_INFOR_ORIENT1 to CDR_INFOR_ORIENT8. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Caregiver or Clinical Impression Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0451074
UMLS CUI [1,2]
C0029266
UMLS CUI [1,3]
C1550484
UMLS CUI [1,4]
C2964552
CDR_Judgement and Problem Solving Questions for Informant total score
Description

As this questionaire is copyrighted, the 6 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are CDR_INFOR_JUDGE_PROB1 to CDR_INFOR_JUDGE_PROB6. Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Caregiver or Clinical Impression Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0451074
UMLS CUI [1,2]
C0022423
UMLS CUI [1,3]
C0033211
UMLS CUI [1,4]
C1550484
UMLS CUI [1,5]
C2964552
CDR_Community Affairs Questions for Informant total score
Description

As this questionaire is copyrighted, the 27 actual questions are not included in this version of the standard set. ICHOM ID of the single questions are CDR_INFOR_COMMAFF, CDR_INFOR_COMMAFF1 to CDR_INFOR_COMMAFF10. Additionnaly some questions have subquestions: CDR_INFOR_COMMAFF4A, CDR_INFOR_COMMAFF4B, CDR_INFOR_COMMAFF8A, CDR_INFOR_COMMAFF10_1A, CDR_INFOR_COMMAFF10_1B, CDR_INFOR_COMMAFF10_2A, CDR_INFOR_COMMAFF10_2B, CDR_INFOR_COMMAFF10_3, CDR_INFOR_COMMAFF10_4, CDR_INFOR_COMMAFF10_4A, CDR_INFOR_COMMAFF10_5, CDR_INFOR_COMMAFF10_6, CDR_INFOR_COMMAFF10_6A to CDR_INFOR_COMMAFF10_6D Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Caregiver or Clinical Impression Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0451074
UMLS CUI [1,2]
C3640458
UMLS CUI [1,3]
C1550484
UMLS CUI [1,4]
C2964552
Daily Living
Description

Daily Living

Alias
UMLS CUI-1
C4552744
Includes activities of daily living such as sleeping, eating and financial resource. Tracked via the Bristol Activity Daily Living Scale
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Options: 0-­60

Data type

integer

Alias
UMLS CUI [1]
C2959408
Cognitive
Description

Cognitive

Alias
UMLS CUI-1
C0392335
Includes memory, orientation, verbal fluency and executive function (tracked via the Montreal Cognitive Assessment)
Description

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Options: 0-­30

Data type

integer

Alias
UMLS CUI [1]
C3496286

Similar models

Index event and Baseline - Clinical Form

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])
Item Group
Demographic factors
C1704791 (UMLS CUI-1)
Age
Item
Date of birth
date
C0001779 (UMLS CUI [1])
C0421451 (UMLS CUI [2])
Item
Sex at birth
integer
C0079399 (UMLS CUI [1])
Code List
Sex at birth
CL Item
Male (0)
C1706180 (UMLS CUI-1)
(Comment:en)
CL Item
Female (1)
C0086287 (UMLS CUI-1)
(Comment:en)
Body mass index
Item
Body mass index
float
C1305855 (UMLS CUI [1])
Item Group
Baseline Clinical Factors
C0449440 (UMLS CUI-1)
C1442488 (UMLS CUI-2)
Item
Type of dementia diagnosis and subtype using ICD classification
integer
C0332307 (UMLS CUI [1,1])
C0497327 (UMLS CUI [1,2])
Code List
Type of dementia diagnosis and subtype using ICD classification
CL Item
Dementia in Alzheimer's disease with early onset (0)
C0002395 (UMLS CUI-1)
C1833334 (UMLS CUI-2)
(Comment:en)
CL Item
Dementia in Alzheimer's disease with late onset (1)
C0002395 (UMLS CUI-1)
C0332162 (UMLS CUI-2)
C0205087 (UMLS CUI-3)
(Comment:en)
CL Item
Dementia in Alzheimer's disease, atypical or mixed type (2)
C0002395 (UMLS CUI-1)
C0205182 (UMLS CUI-2)
C3532942 (UMLS CUI-3)
(Comment:en)
CL Item
Dementia in Alzheimer's disease, unspecified (3)
C0002395 (UMLS CUI-1)
C0205370 (UMLS CUI-2)
(Comment:en)
CL Item
Vascular dementia of acute onset (4)
C0011269 (UMLS CUI-1)
C0205178 (UMLS CUI-2)
C0332162 (UMLS CUI-3)
(Comment:en)
CL Item
Multi‐infarct dementia (5)
C0497327 (UMLS CUI-1)
C0439064 (UMLS CUI-2)
C0021308 (UMLS CUI-3)
(Comment:en)
CL Item
Subcortical vascular dementia (6)
C0011269 (UMLS CUI-1)
C0815275 (UMLS CUI-2)
(Comment:en)
CL Item
Mixed cortical and subcortical vascular dementia (7)
C0011269 (UMLS CUI-1)
C0205430 (UMLS CUI-2)
C0007776 (UMLS CUI-3)
C0815275 (UMLS CUI-4)
(Comment:en)
CL Item
Other vascular dementia (8)
C0011269 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
(Comment:en)
CL Item
Vascular dementia, unspecified (9)
C0011269 (UMLS CUI-1)
C0205370 (UMLS CUI-2)
(Comment:en)
CL Item
Dementia in Pick's disease (10)
C1399562 (UMLS CUI-1)
(Comment:en)
CL Item
Dementia in Creutzfeldt-­Jakob disease (11)
C0236641 (UMLS CUI-1)
(Comment:en)
CL Item
Dementia in Huntington's disease (12)
C0349080 (UMLS CUI-1)
(Comment:en)
CL Item
Dementia in Parkinson's disease (13)
C0236960 (UMLS CUI-1)
(Comment:en)
CL Item
Dementia in human immunodeficiency virus [HIV] disease (14)
C0001849 (UMLS CUI-1)
(Comment:en)
CL Item
Dementia in other specified diseases classified elsewhere (15)
C0349079 (UMLS CUI-1)
(Comment:en)
CL Item
Unspecified dementia (16)
C0497327 (UMLS CUI-1)
C0205370 (UMLS CUI-2)
(Comment:en)
Item
Level of dementia tracked via the Clinical Dementia Rating scale
integer
C4718742 (UMLS CUI [1])
C0451074 (UMLS CUI [2])
Code List
Level of dementia tracked via the Clinical Dementia Rating scale
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
Questionable (1)
C0459423 (UMLS CUI-1)
(Comment:en)
CL Item
Mild (2)
C2945599 (UMLS CUI-1)
(Comment:en)
CL Item
Moderate (3)
C0205081 (UMLS CUI-1)
(Comment:en)
CL Item
Severe (4)
C0205082 (UMLS CUI-1)
(Comment:en)
Item Group
Associated clinical history
C0262926 (UMLS CUI-1)
C0332281 (UMLS CUI-2)
Item
Has the person with dementia sustained a traumatic brain injury prior to dementia diagnosis, classified as mild/minor, moderate or severe?
integer
C0270611 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
C0497327 (UMLS CUI [1,3])
Code List
Has the person with dementia sustained a traumatic brain injury prior to dementia diagnosis, classified as mild/minor, moderate or severe?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes, classification unknown (1)
C1705108 (UMLS CUI-1)
C0017594 (UMLS CUI-2)
C0439673 (UMLS CUI-3)
(Comment:en)
CL Item
Yes, classified as mild/minor (2)
C1705108 (UMLS CUI-1)
C0017594 (UMLS CUI-2)
C2945599 (UMLS CUI-3)
(Comment:en)
CL Item
Yes, classified as moderate (3)
C1705108 (UMLS CUI-1)
C0017594 (UMLS CUI-2)
C0205081 (UMLS CUI-3)
(Comment:en)
CL Item
Yes, classified as severe (4)
C1705108 (UMLS CUI-1)
C0017594 (UMLS CUI-2)
C0205082 (UMLS CUI-3)
(Comment:en)
CL Item
unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Item
Has the person with dementia sustained a cardio-­vascular event in the previous year?
integer
C1320716 (UMLS CUI [1,1])
C0021149 (UMLS CUI [1,2])
Code List
Has the person with dementia sustained a cardio-­vascular event in the previous year?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
CL Item
unknown (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Co-­morbid conditions: The person with dementia has no other diseases
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 0 = The person with dementia has no other diseases
boolean
C0009488 (UMLS CUI [1])
C1298908 (UMLS CUI [2])
Co-­morbid conditions: Heart disease
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 1 = Heart disease (for example angina, heart attack or heart failure)
boolean
C0009488 (UMLS CUI [1])
C0018799 (UMLS CUI [2])
C0018801 (UMLS CUI [3])
C0002962 (UMLS CUI [4])
C0027051 (UMLS CUI [5])
Co-­morbid conditions: High blood pressure
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 2 = High blood pressure (sometimes referred to as 'hypertension')
boolean
C0009488 (UMLS CUI [1])
C0020538 (UMLS CUI [2])
Co-­morbid conditions: Lung disease
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 3 = Lung disease (for example asthma, chronic bronchitis or emphysema)
boolean
C0009488 (UMLS CUI [1])
C0024115 (UMLS CUI [2])
C0004096 (UMLS CUI [3])
C0008677 (UMLS CUI [4])
C0034067 (UMLS CUI [5])
Co-­morbid conditions: Leg pain when walking due to poor circulation
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 4 = Leg pain when walking due to poor circulation
boolean
C0009488 (UMLS CUI [1])
C1306889 (UMLS CUI [2])
Co-­morbid conditions: Diabetes
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 5 = Diabetes (Type I or Type II)
boolean
C0009488 (UMLS CUI [1])
C0011854 (UMLS CUI [2])
C0011860 (UMLS CUI [3])
Co-­morbid conditions: Kidney disease
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 6 = Kidney disease
boolean
C0009488 (UMLS CUI [1])
C0022658 (UMLS CUI [2])
Co-­morbid conditions: Disease of the nervous system
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 7 = Disease of the nervous system (for example Parkinson's disease or multiple sclerosis)
boolean
C0009488 (UMLS CUI [1])
C0027765 (UMLS CUI [2])
C0030567 (UMLS CUI [3])
C0026769 (UMLS CUI [4])
Co-­morbid conditions: Liver disease
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 8 = Liver disease
boolean
C0009488 (UMLS CUI [1])
C0023895 (UMLS CUI [2])
Co-­morbid conditions: Cancer
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 9 = Cancer (within the last 5 years)
boolean
C0009488 (UMLS CUI [1])
C0006826 (UMLS CUI [2])
Co-­morbid conditions: Depression before diagnosis of dementia
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 10 = Depression before diagnosis of dementia
boolean
C0009488 (UMLS CUI [1])
C0011581 (UMLS CUI [2,1])
C0332152 (UMLS CUI [2,2])
C0497327 (UMLS CUI [2,3])
Co-­morbid conditions: High cholesterol
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 11 = High cholesterol (sometimes referred to as hyperlipidemia)
boolean
C0009488 (UMLS CUI [1])
C0020443 (UMLS CUI [2])
Co-­morbid conditions: Problems caused by stroke
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 12 = Problems caused by stroke
boolean
C0009488 (UMLS CUI [1])
C0038454 (UMLS CUI [2,1])
C0678227 (UMLS CUI [2,2])
C1546466 (UMLS CUI [2,3])
Co-­morbid conditions: Substance abuse
Item
Have you ever been told by a doctor that you have any of the following? (select all that apply) 13 = Substance abuse
boolean
C0009488 (UMLS CUI [1])
C0038586 (UMLS CUI [2])
Item Group
Medication variables
C0013227 (UMLS CUI-1)
Total number of medications prescribed
Item
What is the total number of (non‐topical, and not over‐the­‐counter) medications (for dementia and/or other conditions) the person with dementia has been prescribed
integer
C0750480 (UMLS CUI [1,1])
C3166216 (UMLS CUI [1,2])
C0332300 (UMLS CUI [2,1])
C1522168 (UMLS CUI [2,2])
Item
Indicate if the person with dementia is currently prescribed an acetylcholinesterase inhibitor
integer
C0001046 (UMLS CUI [1])
Code List
Indicate if the person with dementia is currently prescribed an acetylcholinesterase inhibitor
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the person with dementia is currently prescribed a NMDA receptor antagonist
integer
C2916808 (UMLS CUI [1])
Code List
Indicate if the person with dementia is currently prescribed a NMDA receptor antagonist
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the person with dementia is currently prescribed any antipsychotic drugs (also known as neuroleptics or major tranquillizers)
integer
C0040615 (UMLS CUI [1])
Code List
Indicate if the person with dementia is currently prescribed any antipsychotic drugs (also known as neuroleptics or major tranquillizers)
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the person with dementia is currently prescribed an antidepressant
integer
C0003289 (UMLS CUI [1])
Code List
Indicate if the person with dementia is currently prescribed an antidepressant
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the person with dementia is currently prescribed an anticonvulsant medication
integer
C0003286 (UMLS CUI [1])
Code List
Indicate if the person with dementia is currently prescribed an anticonvulsant medication
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the person with dementia is currently prescribed a hypnotic
integer
C0020591 (UMLS CUI [1])
Code List
Indicate if the person with dementia is currently prescribed a hypnotic
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item Group
Outcome
C1547647 (UMLS CUI-1)
Item
Level of dementia (tracked via the Clinical Dementia Rating)
integer
C0242656 (UMLS CUI [1])
C4718742 (UMLS CUI [2])
C0451074 (UMLS CUI [3])
Code List
Level of dementia (tracked via the Clinical Dementia Rating)
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
Questionable (1)
C0459423 (UMLS CUI-1)
(Comment:en)
CL Item
Mild (2)
C2945599 (UMLS CUI-1)
(Comment:en)
CL Item
Moderate (3)
C0205081 (UMLS CUI-1)
(Comment:en)
CL Item
Severe (4)
C0205082 (UMLS CUI-1)
(Comment:en)
Item Group
Neuropsychiatric
C3203509 (UMLS CUI-1)
NPI_C ‐ Delusions total score
Item
NPI_C ‐ Delusions total score
integer
C3539727 (UMLS CUI [1,1])
C0011253 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
NPI_C ‐ Hallucinations total score
Item
NPI_C ‐ Hallucinations total score
integer
C3539727 (UMLS CUI [1,1])
C0018524 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
NPI_C ‐ Agitation total score
Item
NPI_C ‐ Agitation total score
integer
C3539727 (UMLS CUI [1,1])
C0085631 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
NPI_C ‐ Aggression total score
Item
NPI_C ‐ Aggression total score
integer
C3539727 (UMLS CUI [1,1])
C1457883 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
NPI_C ‐ Dysphoria total score
Item
NPI_C ‐ Dysphoria total score
integer
C3539727 (UMLS CUI [1,1])
C3176492 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
NPI_C ‐ Anxiety total score
Item
NPI_C ‐ Anxiety total score
integer
C3539727 (UMLS CUI [1,1])
C0003467 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
NPI_C ‐ Apathy/Indifference total score
Item
NPI_C ‐ Apathy/Indifference total score
integer
C3539727 (UMLS CUI [1,1])
C3828762 (UMLS CUI [1,2])
NPI_C ‐ Sleep Disorders total score
Item
NPI_C ‐ Sleep Disorders total score
integer
C3539727 (UMLS CUI [1,1])
C0851578 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
NPI_C ‐ Appetite and Eating Disorders total score
Item
NPI_C ‐ Appetite and Eating Disorders total score
integer
C3539727 (UMLS CUI [1,1])
C0003621 (UMLS CUI [1,2])
C0013473 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
Item Group
Clinical Dementia Rating
C0451074 (UMLS CUI-1)
CDR_Memory Questions for Informant total score
Item
CDR_Memory Questions for Informant total score
text
C0451074 (UMLS CUI [1,1])
C0025260 (UMLS CUI [1,2])
C1550484 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
CDR_Orientation Questions for Informant total score
Item
CDR_Orientation Questions for Informant total score
text
C0451074 (UMLS CUI [1,1])
C0029266 (UMLS CUI [1,2])
C1550484 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
CDR_Judgement and Problem Solving Questions for Informant total score
Item
CDR_Judgement and Problem Solving Questions for Informant total score
text
C0451074 (UMLS CUI [1,1])
C0022423 (UMLS CUI [1,2])
C0033211 (UMLS CUI [1,3])
C1550484 (UMLS CUI [1,4])
C2964552 (UMLS CUI [1,5])
CDR_Community Affairs Questions for Informant total score
Item
CDR_Community Affairs Questions for Informant total score
text
C0451074 (UMLS CUI [1,1])
C3640458 (UMLS CUI [1,2])
C1550484 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
Item Group
Daily Living
C4552744 (UMLS CUI-1)
Daily living
Item
Includes activities of daily living such as sleeping, eating and financial resource. Tracked via the Bristol Activity Daily Living Scale
integer
C2959408 (UMLS CUI [1])
Item Group
Cognitive
C0392335 (UMLS CUI-1)
Cognitive
Item
Includes memory, orientation, verbal fluency and executive function (tracked via the Montreal Cognitive Assessment)
integer
C3496286 (UMLS CUI [1])

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