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40620

Description

ICHOM Older Person data collection Version 1.0.4 Revised: July 12, 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 Older Persons, the following treatment approaches are covered by our Standard Set. Treatment approaches: These have not been defined due to the wide range of management options and interventions for an older population. A number of potentially inappropriate medications have been listed as ‘medication variables’. This document contains the Baseline and Follow-up Caregiver-reported Form. It has to be filled in at patient's entry into the set (Baseline). For Follow-up: fill in at least annually, but may be filled in more often (annually for a 69 year old person not admitted to hospital within 1 year, but 6-monthly for a 84 year old person). Collecting Patient-Reported Outcome Measures: Medical Outcomes Study: 36-Item Short Form Survey Instrument Version 1 (SF-36). RAND owns the copyright. All of the surveys and tools from RAND Health are public documents, available without charge. No further written permission is needed for use of this Health Survey. For more information see http://www. rand.org/health/surveys_tools/mos/mos_ core_36item_survey.html UCLA 3-Item Loneliness Scale. Hughes ME, Waite LJ, Hawkley LC, Cacioppo JT (2004) A short scale for measuring loneliness in large surveys: Results from two population-based studies. Res Aging 26(6):655–672. Barthel Index. The Maryland State Medical Society holds the copyright for the Barthel Index. It may be used freely for non- commercial purposes with the following citation: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Permission is required to modify the Barthel Index or to use it for commercial purposes. ASCOT Toolkit. As a license agreement is needed for use of this questionnaire, the used question will not be included in this version of the standard set word-for-word. Canadian Study on Health & Aging Clinical Frailty Scale. As a permission is needed for use, the scale will not be included in this version of the standard set word-for-word. Zarit Burden Interview. A license agreement might be neccessary for use of the long version of this questionnaire, for more information see https://eprovide.mapi-trust.org/instruments/zarit-burden-interview . For the used 4-item version (Questions 2, 3, 9, 19) see: Michel Bédard, D. William Molloy, Larry Squire, Sacha Dubois, Judith A. Lever, Martin O'Donnell, The Zarit Burden Interview: A New Short Version and Screening Version, The Gerontologist, Volume 41, Issue 5, 1 October 2001, Pages 652–657, https://doi.org/10.1093/geront/41.5.652. 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. Reference: Akpan A, Roberts C, Bandeen-Roche K, et al. Standard set of health outcome measures for older persons. BMC Geriatr. 2018;18(1):36. Published 2018 Feb 2. doi:10.1186/s12877-017-0701-3 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5797357/) The Standard set of ICHOM was supported by NHS England. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Keywords

  1. 6/27/19 6/27/19 -
  2. 6/27/19 6/27/19 -
  3. 7/24/19 7/24/19 -
  4. 7/26/19 7/26/19 - Sarah Riepenhausen
  5. 4/30/20 4/30/20 - Sarah Riepenhausen
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ICHOM

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April 30, 2020

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Creative Commons BY-NC 4.0

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    ICHOM Older Person

    Baseline and Follow-up - Caregiver-reported

    Administrative Data
    Description

    Administrative Data

    Alias
    UMLS CUI-1
    C1320722 (Administrative documentation)
    SNOMED
    405624007
    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

    Data type

    integer

    Alias
    UMLS CUI [1]
    C2348585 (Clinical Trial Subject Unique Identifier)
    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 (Relative time)
    SNOMED
    118578006
    LOINC
    LP21276-8
    UMLS CUI [1,2]
    C1442488 (Baseline)
    LOINC
    LA16758-7
    Carer burden
    Description

    Carer burden

    Alias
    UMLS CUI-1
    C2828008 (Burden)
    UMLS CUI-2
    C0085537 (Caregiver)
    SNOMED
    133932002
    LOINC
    LP76010-5
    Question 1 of the 4-item Zarit Burden Interview
    Description

    As license for use of this questionaire is not certain at the moment, the question will not be given word for word. Inclusion Criteria: All patients Timing: Baseline and annually Reporting Source: Caregiver-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C2828008 (Burden)
    UMLS CUI [1,2]
    C0085537 (Caregiver)
    SNOMED
    133932002
    LOINC
    LP76010-5
    UMLS CUI [1,3]
    C0021822 (Interview)
    LOINC
    LA4601-6
    Question 2 of the 4-item Zarit Burden Interview
    Description

    As license for use of this questionaire is not certain at the moment, the question will not be given word for word. Inclusion Criteria: All patients Timing: Baseline and annually Reporting Source: Caregiver-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C2828008 (Burden)
    UMLS CUI [1,2]
    C0085537 (Caregiver)
    SNOMED
    133932002
    LOINC
    LP76010-5
    UMLS CUI [1,3]
    C0021822 (Interview)
    LOINC
    LA4601-6
    Question 3 of the 4-item Zarit Burden Interview
    Description

    As license for use of this questionaire is not certain at the moment, the question will not be given word for word. Inclusion Criteria: All patients Timing: Baseline and annually Reporting Source: Caregiver-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C2828008 (Burden)
    UMLS CUI [1,2]
    C0085537 (Caregiver)
    SNOMED
    133932002
    LOINC
    LP76010-5
    UMLS CUI [1,3]
    C0021822 (Interview)
    LOINC
    LA4601-6
    Question 4 of the 4-item Zarit Burden Interview
    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, the question will not be given word for word. Inclusion Criteria: All patients Timing: Baseline and annually Reporting Source: Patient-reported Type: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C2828008 (Burden)
    UMLS CUI [1,2]
    C0085537 (Caregiver)
    SNOMED
    133932002
    LOINC
    LP76010-5
    UMLS CUI [1,3]
    C0021822 (Interview)
    LOINC
    LA4601-6
    Place of death
    Description

    Place of death

    Alias
    UMLS CUI-1
    C0421611 (Place of death)
    SNOMED
    313384009
    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

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0011065 (Cessation of life)
    SNOMED
    419620001
    UMLS CUI [1,2]
    C0421611 (Place of death)
    SNOMED
    313384009
    UMLS CUI [1,3]
    C0558295 (preference)
    SNOMED
    225773000
    UMLS CUI [1,4]
    C0680844 (estimation <subjective>)
    UMLS CUI [1,5]
    C0080103 (Relative (related person))
    SNOMED
    125677006

    Similar models

    Baseline and Follow-up - Caregiver-reported

    Name
    Type
    Description | Question | Decode (Coded Value)
    Data type
    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
    Item
    Question 1 of the 4-item Zarit Burden Interview
    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
    Item
    Question 2 of the 4-item Zarit Burden Interview
    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
    Item
    Question 3 of the 4-item Zarit Burden Interview
    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
    Item
    Question 4 of the 4-item Zarit Burden Interview
    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])
    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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