ID

38397

Description

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/ 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 6 years - Patient Form. It has to be filled in 6 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 instead. 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.

Link

http://www.ichom.org/

Keywords

Versions (4)
  1. 10/12/19 10/12/19 -
  2. 10/16/19 10/16/19 -
  3. 10/23/19 10/23/19 - Sarah Riepenhausen
  4. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

October 16, 2019

DOI

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License

Creative Commons BY-NC 3.0
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ICHOM Congenital Upper Limb Anomalies

English

Follow-up 6 years - Patient Form

1 forms  
Administrative Data
Description

Administrative Data

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

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

Data type

text

Alias
UMLS CUI [1]
C1269815
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
Degree of Health
Description

Degree of Health

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

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

Data type

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?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0036594
UMLS CUI [1,2]
C0282416
UMLS CUI [1,3]
C2603369
UMLS CUI [1,4]
C0018563
Do you care about what others think of your hand appearance?
Description

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

Data type

integer

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

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

Data type

integer

Alias
UMLS CUI [1,1]
C0036594
UMLS CUI [1,2]
C2986411
UMLS CUI [1,3]
C0018563
UMLS CUI [1,4]
C0700364
Do you think your hands look asymmetrical?
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0036594
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?
Description

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

Data type

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
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C3836333
UMLS CUI [1,2]
C0030755
UMLS CUI [1,3]
C2964552
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Similar models

Follow-up 6 years - Patient Form

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
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
C0036594 (UMLS CUI [1,1])
C0282416 (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])
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
C0036594 (UMLS CUI [1,1])
C2986411 (UMLS CUI [1,2])
C0018563 (UMLS CUI [1,3])
C0700364 (UMLS CUI [1,4])
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
C0036594 (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
C3836333 (UMLS CUI [1,1])
C0030755 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
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