0 Evaluaciones
ID

40680

Descripción

ICHOM Congenital Upper Limb Anomalies data collection Version 1.0.0 August 31st, 2018 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 Congenital Upper Limb Anomalies, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Congenital Hand Anomaly | Congenital Upper Limb Anomaly | Apert | Cleft Hand | Constriction Ring | Polydactyly | Radial Ray Deficiency | Symbrachydactyly | Thumb Hypoplasia | Ulnar Dysplasia | Ulnar Ray Deficiency Treatment approaches: Surgery | Rehabilitation | Other This document contains the Follow-up, 8, 12, 15, 16-18 years - Patient Form. It has to be filled in 8, 12, 15, 16-18 years after Patient's entry into set. If the patient is unable to respond to the questionnaires, please let the parent fill in the parent reported follow-up form. Collecting Patient-Reported Outcome Measures: Joint Mobility Questions. There are no licensing requirements to use these questions. PROMIS Upper Extremity, Global Health, Peer relationships, Anxiety, Depression. As there is an official distribution site, these questionnaires will not be included in this version of the standard set. For more information see: http://www.healthmeasures.net/exploremeasurement-systems/promis/obtain-administer-measures Goniometry, Dynamometry for Clinician. Follow the clinical assessment recommendations of the American Dynamometry - Clinician Society of Hand Therapists. Manual Muscle Strength Testing – Clinician. Use the Medical Research Council MMST grading. Oberg-Manske-Tonkin Classification. For more information see: Oberg KC, Feenstra JM, Manske PR, et al. Developmental biology and classification of congenital anomalies of the hand and upper extremity. J Hand Surg Am. 2010;35:2066. The Standard set of ICHOM was supported by the Great Ormond Stres Hospital, the Boston Children’s Hospital, the Erasmus MC, the Royal North Shore Hospital, the Texas Scottish Rite Hospital and the Loma Linda University. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Palabras clave

Versiones (3)
  1. 10/10/19 10/10/19 -
  2. 23/10/19 23/10/19 - Sarah Riepenhausen
  3. 30/4/20 30/4/20 - Sarah Riepenhausen
Titular de derechos de autor

ICHOM

Subido en

30 de abril de 2020

DOI

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Licencia

Creative Commons BY-NC 4.0
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    ICHOM Congenital Upper Limb Anomalies

    Inglés

    Follow-up, 8, 12, 15, 16-18 years - Patient Form

    1 formularios  
    Administrative Data
    Descripción

    Administrative Data

    Alias
    UMLS CUI-1
    C1320722
    Indicate the patient's medical record number
    Descripción

    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

    Tipo de datos

    text

    Alias
    UMLS CUI [1]
    C1269815
    Time Relative to Baseline
    Descripción

    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.

    Tipo de datos

    text

    Alias
    UMLS CUI [1,1]
    C0439564
    UMLS CUI [1,2]
    C1442488
    Degree of Health
    Descripción

    Degree of Health

    Alias
    UMLS CUI-1
    C0018759
    PROMIS Paediatric Physical Function - Upper Extremity Short Form, total score
    Descripción

    As there is an official distribution site, the actual 8 questions of this questionnaire are not included in this version of the standard set. The ICHOM OIDs are: PROMIS-UE_Q01 to PROMIS-UE_Q08. Supporting Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C3693645
    UMLS CUI [1,2]
    C1140618
    UMLS CUI [1,3]
    C0030755
    UMLS CUI [1,4]
    C0516981
    UMLS CUI [1,5]
    C2964552
    What is your overall assessment of the appearance of your hand?
    Descripción

    Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C0242498
    UMLS CUI [1,2]
    C1561607
    UMLS CUI [1,3]
    C2603369
    UMLS CUI [1,4]
    C0018563
    Do you care about what others think of your hand appearance?
    Descripción

    Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1]
    C0033963
    UMLS CUI [2,1]
    C0037427
    UMLS CUI [2,2]
    C0018563
    UMLS CUI [2,3]
    C0700364
    UMLS CUI [3]
    C3641210
    Do you believe the appearance of your hand could be better?
    Descripción

    Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C0242498
    UMLS CUI [1,2]
    C0747309
    UMLS CUI [1,3]
    C2986411
    UMLS CUI [1,4]
    C0018563
    UMLS CUI [1,5]
    C0700364
    Do you think your hands look asymmetrical?
    Descripción

    Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C0242498
    UMLS CUI [1,2]
    C0018563
    UMLS CUI [1,3]
    C0700364
    UMLS CUI [1,4]
    C0332514
    How has your intervention affected the appearance of your hands?
    Descripción

    Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C0184661
    UMLS CUI [1,2]
    C0392760
    UMLS CUI [1,3]
    C0018563
    UMLS CUI [1,4]
    C0700364
    PROMIS Paediatric Physical Function - Global health, total score
    Descripción

    As there is an official distribution site, the actual 7 questions of this questionnaire are not included in this version of the standard set. The ICHOM OIDs are: PROMIS-CPGH7_Q01 to PROMIS-CPGH7_Q07. Supporting Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C3693645
    UMLS CUI [1,2]
    C0030755
    UMLS CUI [1,3]
    C2964552
    PROMIS Global health - general health status, total score
    Descripción

    As there is an official distribution site, the actual 10 questions of this questionnaire are not included in this version of the standard set. The ICHOM OIDs are: PROMIS-10_Q01 to PROMIS-10_Q10. Supporting Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C3836333
    UMLS CUI [1,2]
    C1521725
    UMLS CUI [1,3]
    C2964552
    PROMIS Peer relationships, total score
    Descripción

    As there is an official distribution site, the actual 8 questions of this questionnaire are not included in this version of the standard set. The ICHOM OIDs are: PROMIS-PEER_Q01 to PROMIS-PEER_Q08. Supporting Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C3693645
    UMLS CUI [1,2]
    C1521725
    UMLS CUI [1,3]
    C0021797
    UMLS CUI [1,4]
    C2964552
    PROMIS Anxiety, total score
    Descripción

    As there is an official distribution site, the actual 8 questions of this questionnaire are not included in this version of the standard set. The ICHOM OIDs are: PROMIS-ANX_Q01 to PROMIS-ANX_Q08. Supporting Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C3693645
    UMLS CUI [1,2]
    C0003467
    UMLS CUI [1,3]
    C2964552
    PROMIS Depression, total score
    Descripción

    As there is an official distribution site, the actual 8 questions of this questionnaire are not included in this version of the standard set. The ICHOM OIDs are: PROMIS-DEP_Q01 to PROMIS-DEP_Q08. Supporting Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

    Tipo de datos

    integer

    Alias
    UMLS CUI [1,1]
    C3693645
    UMLS CUI [1,2]
    C0011581
    UMLS CUI [1,3]
    C2964552
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    Similar models

    Follow-up, 8, 12, 15, 16-18 years - Patient Form

    1 formularios
    Name
    Tipo
    Description | Question | Decode (Coded Value)
    Tipo de datos
    Alias
    Item Group
    Administrative Data
    C1320722 (UMLS CUI-1)
    Patient ID
    Item
    Indicate the patient's medical record number
    text
    C1269815 (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
    Degree of Health
    C0018759 (UMLS CUI-1)
    PROMIS Paediatric Physical Function - Upper Extremity Short Form, total score
    Item
    PROMIS Paediatric Physical Function - Upper Extremity Short Form, total score
    integer
    C3693645 (UMLS CUI [1,1])
    C1140618 (UMLS CUI [1,2])
    C0030755 (UMLS CUI [1,3])
    C0516981 (UMLS CUI [1,4])
    C2964552 (UMLS CUI [1,5])
    Item
    What is your overall assessment of the appearance of your hand?
    integer
    C0242498 (UMLS CUI [1,1])
    C1561607 (UMLS CUI [1,2])
    C2603369 (UMLS CUI [1,3])
    C0018563 (UMLS CUI [1,4])
    Overall Aesthetics
    Code List
    What is your overall assessment of the appearance of your hand?
    CL Item
    Poor (1)
    C2700379 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Fair (2)
    C2911689 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Good (3)
    C0205170 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Very good (4)
    C3641222 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Excellent (5)
    C1961136 (UMLS CUI-1)
    (Comment:en)
    Item
    Do you care about what others think of your hand appearance?
    integer
    C0033963 (UMLS CUI [1])
    C0037427 (UMLS CUI [2,1])
    C0018563 (UMLS CUI [2,2])
    C0700364 (UMLS CUI [2,3])
    C3641210 (UMLS CUI [3])
    Psychosocial
    Code List
    Do you care about what others think of your hand appearance?
    CL Item
    Never (1)
    C2003901 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Rarely (2)
    C0522498 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Sometimes (3)
    C1998882 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Often (4)
    C0332183 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Always (5)
    C2003902 (UMLS CUI-1)
    (Comment:en)
    Item
    Do you believe the appearance of your hand could be better?
    integer
    C0242498 (UMLS CUI [1,1])
    C0747309 (UMLS CUI [1,2])
    C2986411 (UMLS CUI [1,3])
    C0018563 (UMLS CUI [1,4])
    C0700364 (UMLS CUI [1,5])
    Expectations
    Code List
    Do you believe the appearance of your hand could be better?
    CL Item
    Not at all (1)
    C2984077 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Somewhat (2)
    C2984079 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Extremely (3)
    C0205403 (UMLS CUI-1)
    (Comment:en)
    Item
    Do you think your hands look asymmetrical?
    integer
    C0242498 (UMLS CUI [1,1])
    C0018563 (UMLS CUI [1,2])
    C0700364 (UMLS CUI [1,3])
    C0332514 (UMLS CUI [1,4])
    Expectations
    Code List
    Do you think your hands look asymmetrical?
    CL Item
    Not at all (1)
    C2984077 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Somewhat (2)
    C2984079 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Extremely (3)
    C0205403 (UMLS CUI-1)
    (Comment:en)
    Item
    How has your intervention affected the appearance of your hands?
    integer
    C0184661 (UMLS CUI [1,1])
    C0392760 (UMLS CUI [1,2])
    C0018563 (UMLS CUI [1,3])
    C0700364 (UMLS CUI [1,4])
    Expectations
    Code List
    How has your intervention affected the appearance of your hands?
    CL Item
    Not at all (1)
    C2984077 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Somewhat (2)
    C2984079 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Extremely (3)
    C0205403 (UMLS CUI-1)
    (Comment:en)
    PROMIS Paediatric Physical Function - Global health, total score
    Item
    PROMIS Paediatric Physical Function - Global health, total score
    integer
    C3693645 (UMLS CUI [1,1])
    C0030755 (UMLS CUI [1,2])
    C2964552 (UMLS CUI [1,3])
    PROMIS Global health - general health status, total score
    Item
    PROMIS Global health - general health status, total score
    integer
    C3836333 (UMLS CUI [1,1])
    C1521725 (UMLS CUI [1,2])
    C2964552 (UMLS CUI [1,3])
    PROMIS Peer relationships, total score
    Item
    PROMIS Peer relationships, total score
    integer
    C3693645 (UMLS CUI [1,1])
    C1521725 (UMLS CUI [1,2])
    C0021797 (UMLS CUI [1,3])
    C2964552 (UMLS CUI [1,4])
    PROMIS Anxiety, total score
    Item
    PROMIS Anxiety, total score
    integer
    C3693645 (UMLS CUI [1,1])
    C0003467 (UMLS CUI [1,2])
    C2964552 (UMLS CUI [1,3])
    PROMIS Depression, total score
    Item
    PROMIS Depression, total score
    integer
    C3693645 (UMLS CUI [1,1])
    C0011581 (UMLS CUI [1,2])
    C2964552 (UMLS CUI [1,3])
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