ID
36725
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/ 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 Annual - Clinical Form. It has to be filled in annually (from baseline). 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.
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Mots-clés
Versions (5)
- 04/06/2019 04/06/2019 -
- 04/06/2019 04/06/2019 - Sarah Riepenhausen
- 04/06/2019 04/06/2019 -
- 04/06/2019 04/06/2019 -
- 30/04/2020 30/04/2020 - Sarah Riepenhausen
Détendeur de droits
ICHOM
Téléchargé le
4 juin 2019
DOI
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Creative Commons BY-NC 3.0
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ICHOM Dementia
Annual - Clinical Form
- StudyEvent: ODM
Description
Demographic factors
Alias
- UMLS CUI-1
- C1704791
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
Type de données
float
Unités de mesure
- kg/m^2
Alias
- UMLS CUI [1]
- C1305855
Description
Associated clinical history
Alias
- UMLS CUI-1
- C0262926
- UMLS CUI-2
- C0332281
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
Type de données
integer
Alias
- UMLS CUI [1,1]
- C1320716
- UMLS CUI [1,2]
- C0021149
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C1298908
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0018799
- UMLS CUI [3]
- C0018801
- UMLS CUI [4]
- C0002962
- UMLS CUI [5]
- C0027051
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0020538
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0024115
- UMLS CUI [3]
- C0004096
- UMLS CUI [4]
- C0008677
- UMLS CUI [5]
- C0034067
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C1306889
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0011854
- UMLS CUI [3]
- C0011860
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0022658
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0027765
- UMLS CUI [3]
- C0030567
- UMLS CUI [4]
- C0026769
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0023895
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0006826
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0011581
- UMLS CUI [2,2]
- C0332152
- UMLS CUI [2,3]
- C0497327
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0020443
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2,1]
- C0038454
- UMLS CUI [2,2]
- C0678227
- UMLS CUI [2,3]
- C1546466
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
Type de données
boolean
Alias
- UMLS CUI [1]
- C0009488
- UMLS CUI [2]
- C0038586
Description
Medication variables
Alias
- UMLS CUI-1
- C0013227
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Numerical value
Type de données
integer
Alias
- UMLS CUI [1,1]
- C0750480
- UMLS CUI [1,2]
- C3166216
- UMLS CUI [2,1]
- C0332300
- UMLS CUI [2,2]
- C1522168
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer
Type de données
integer
Alias
- UMLS CUI [1]
- C0001046
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer
Type de données
integer
Alias
- UMLS CUI [1]
- C2916808
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer
Type de données
integer
Alias
- UMLS CUI [1]
- C0040615
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer
Type de données
integer
Alias
- UMLS CUI [1]
- C0003289
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer
Type de données
integer
Alias
- UMLS CUI [1]
- C0003286
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical or administrative data Type: Single answer
Type de données
integer
Alias
- UMLS CUI [1]
- C0020591
Description
Outcome
Alias
- UMLS CUI-1
- C1547647
Description
Neuropsychiatric
Alias
- UMLS CUI-1
- C3203509
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C0011253
- UMLS CUI [1,3]
- C2964552
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C0018524
- UMLS CUI [1,3]
- C2964552
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C0085631
- UMLS CUI [1,3]
- C2964552
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C1457883
- UMLS CUI [1,3]
- C2964552
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C3176492
- UMLS CUI [1,3]
- C2964552
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C0003467
- UMLS CUI [1,3]
- C2964552
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C3828762
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C0851578
- UMLS CUI [1,3]
- C2964552
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)
Type de données
integer
Alias
- UMLS CUI [1,1]
- C3539727
- UMLS CUI [1,2]
- C0003621
- UMLS CUI [1,3]
- C0013473
- UMLS CUI [1,4]
- C2964552
Description
Clinical Dementia Rating
Alias
- UMLS CUI-1
- C0451074
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
Type de données
text
Alias
- UMLS CUI [1,1]
- C0451074
- UMLS CUI [1,2]
- C0025260
- UMLS CUI [1,3]
- C1550484
- UMLS CUI [1,4]
- C2964552
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
Type de données
text
Alias
- UMLS CUI [1,1]
- C0451074
- UMLS CUI [1,2]
- C0029266
- UMLS CUI [1,3]
- C1550484
- UMLS CUI [1,4]
- C2964552
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
Type de données
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
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
Type de données
text
Alias
- UMLS CUI [1,1]
- C0451074
- UMLS CUI [1,2]
- C3640458
- UMLS CUI [1,3]
- C1550484
- UMLS CUI [1,4]
- C2964552
Description
Daily Living
Alias
- UMLS CUI-1
- C4552744
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Options: 0-60
Type de données
integer
Alias
- UMLS CUI [1]
- C2959408
Description
Cognitive
Alias
- UMLS CUI-1
- C0392335
Description
Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Clinical Type: Numerical Response Options: 0-30
Type de données
integer
Alias
- UMLS CUI [1]
- C3496286
Similar models
Annual - Clinical Form
- StudyEvent: ODM
C0332281 (UMLS CUI-2)
C0021149 (UMLS CUI [1,2])
(Comment:en)
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(Comment:en)
C1298908 (UMLS CUI [2])
C0018799 (UMLS CUI [2])
C0018801 (UMLS CUI [3])
C0002962 (UMLS CUI [4])
C0027051 (UMLS CUI [5])
C0020538 (UMLS CUI [2])
C0024115 (UMLS CUI [2])
C0004096 (UMLS CUI [3])
C0008677 (UMLS CUI [4])
C0034067 (UMLS CUI [5])
C1306889 (UMLS CUI [2])
C0011854 (UMLS CUI [2])
C0011860 (UMLS CUI [3])
C0022658 (UMLS CUI [2])
C0027765 (UMLS CUI [2])
C0030567 (UMLS CUI [3])
C0026769 (UMLS CUI [4])
C0023895 (UMLS CUI [2])
C0006826 (UMLS CUI [2])
C0011581 (UMLS CUI [2,1])
C0332152 (UMLS CUI [2,2])
C0497327 (UMLS CUI [2,3])
C0020443 (UMLS CUI [2])
C0038454 (UMLS CUI [2,1])
C0678227 (UMLS CUI [2,2])
C1546466 (UMLS CUI [2,3])
C0038586 (UMLS CUI [2])
C3166216 (UMLS CUI [1,2])
C0332300 (UMLS CUI [2,1])
C1522168 (UMLS CUI [2,2])
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(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
(Comment:en)
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(Comment:en)
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C4718742 (UMLS CUI [2])
C0451074 (UMLS CUI [3])
(Comment:en)
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C0011253 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
C0018524 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
C0085631 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
C1457883 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
C3176492 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
C0003467 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
C3828762 (UMLS CUI [1,2])
C0851578 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
C0003621 (UMLS CUI [1,2])
C0013473 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0025260 (UMLS CUI [1,2])
C1550484 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0029266 (UMLS CUI [1,2])
C1550484 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])
C0022423 (UMLS CUI [1,2])
C0033211 (UMLS CUI [1,3])
C1550484 (UMLS CUI [1,4])
C2964552 (UMLS CUI [1,5])
C3640458 (UMLS CUI [1,2])
C1550484 (UMLS CUI [1,3])
C2964552 (UMLS CUI [1,4])