ID

40659

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/ 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 On referral - Parent-reported Form. It has to be filled in at Patient's entry into the set. Recognising that different countries have established practices and may take time to transition to these time points, ICHOM has agreed age categories for measurement that fit around the recommended specific ages: 6 months: +/- 1 month 1 year: +/- 1 month 2 years: +/- 1 month 8 years: 8-9 years 12 years: 11 - 13 years 15 years: 14 - 15 years End of Paediatric Care: 16 - 18 years (according to the policy of each institution for end of paediatric care) Post-operative period: up to 6 months following the date of the operation 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/

Keywords

Versions (4)
  1. 8/28/19 8/28/19 -
  2. 9/8/19 9/8/19 -
  3. 10/23/19 10/23/19 - Sarah Riepenhausen
  4. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

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Creative Commons BY-NC 4.0
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ICHOM Congenital Upper Limb Anomalies

English

On referral - Parent-reported 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
Patient Demographic Factors
Description

Patient Demographic Factors

Alias
UMLS CUI-1
C1704791
Indicate the patient's date of birth
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Date by DD/MM/YYYY Response Options: DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C0421451
DD/MM/YYYY
Indicate the patient’s sex at birth
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is the Patient's ethnicity?
Description

Note: In the original version of the standard set is not supplemented because it varies by country and should be determined by country (not for cross-country comparison) Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

text

Alias
UMLS CUI [1]
C0034510
Indicate the recorded weight at birth
Description

Supporting Definition: Grams Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value

Data type

float

Measurement units
  • g
Alias
UMLS CUI [1]
C0005612
g
Indicate the length of gestation in completed weeks
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value

Data type

integer

Measurement units
  • weeks
Alias
UMLS CUI [1]
C0460089
weeks
Indicate the patient's age at first encounter with team
Description

Supporting Definition: Recorded in months at 24 months and younger. Recorded in years if older than 24 months Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C1514821
Unit of Age
Description

This Item does not exist in the original verison of the standard set. It can be filled in additionally to the item "FIRSTENC". Supporting Definition: Recorded in months at 24 months and younger. Recorded in years if older than 24 months Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1519795
UMLS CUI [1,2]
C0001779
Indicate the results of the karyotype (if available)
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C1261273
UMLS CUI [1,2]
C0021270
Family Demographic Factors
Description

Family Demographic Factors

Alias
UMLS CUI-1
C1704791
UMLS CUI-2
C0015576
Patient siblings with upper limb congenital malformations
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0037047
UMLS CUI [1,2]
C0749794
Indicate whether the patient is a twin
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0032989
UMLS CUI [2]
C0152150
Indicate the number of children with CULA from the same pregnancy
Description

Inclusion Criteria: If "1 = Yes" to MULTPREG Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0449788
UMLS CUI [1,2]
C0302142
UMLS CUI [1,3]
C0032989
Indicate the mother's date of birth
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Date by DD/MM/YYYY Response Options: DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1,1]
C2599455
UMLS CUI [1,2]
C0026591
DD/MM/YYYY
Indicate whether the patient was conceived through assisted fertilisation
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0521305
Indicate what type of fertilisation the patient was conceived through
Description

Inclusion Criteria: If "1 = Yes" to ASSFERT Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0521305
UMLS CUI [1,2]
C0332307
Indicate whether the mother is blood-related to the father (1st/2nd degree)
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0009789
Indicate whether the mother was diagnosed with diabetes before pregnancy
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1858460
UMLS CUI [1,2]
C0011849
UMLS CUI [1,3]
C0332152
UMLS CUI [1,4]
C0032961
Indicate whether the mother took medication in the first trimester of pregnancy
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0032979
UMLS CUI [1,2]
C0013227
Indicate what type of medication was taken during the first trimester of pregnancy
Description

Inclusion Criteria: If "1 = Yes" to FIRSTTRIMMED Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

text

Alias
UMLS CUI [1,1]
C0032979
UMLS CUI [1,2]
C0013227
UMLS CUI [1,3]
C0332307
Indicate whether alcohol was consumed during the first trimester of pregnancy
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0001948
UMLS CUI [1,2]
C0032979
Indicate whether recreational drugs were consumed during the first trimester of pregnancy
Description

Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0678263
UMLS CUI [1,2]
C0032979
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Similar models

On referral - Parent-reported 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])
Item Group
Patient Demographic Factors
C1704791 (UMLS CUI-1)
Child Date of Birth
Item
Indicate the patient's date of birth
date
C0421451 (UMLS CUI [1])
Item
Indicate the patient’s sex at birth
integer
C0079399 (UMLS CUI [1])
Sex at birth
Code List
Indicate the patient’s sex at birth
CL Item
Male (1)
C1706180 (UMLS CUI-1)
(Comment:en)
CL Item
Female (2)
C0086287 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Race/ethnicity
Item
What is the Patient's ethnicity?
text
C0034510 (UMLS CUI [1])
Weight at birth
Item
Indicate the recorded weight at birth
float
C0005612 (UMLS CUI [1])
Length of gestation
Item
Indicate the length of gestation in completed weeks
integer
C0460089 (UMLS CUI [1])
Age at first encounter with team
Item
Indicate the patient's age at first encounter with team
integer
C0001779 (UMLS CUI [1,1])
C1514821 (UMLS CUI [1,2])
Item
Unit of Age
integer
C1519795 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
Unit of Age
Code List
Unit of Age
CL Item
Month (1)
C0439231 (UMLS CUI-1)
(Comment:en)
CL Item
Year (2)
C0439234 (UMLS CUI-1)
(Comment:en)
Karyotype of infant/foetus
Item
Indicate the results of the karyotype (if available)
text
C1261273 (UMLS CUI [1,1])
C0021270 (UMLS CUI [1,2])
Item Group
Family Demographic Factors
C1704791 (UMLS CUI-1)
C0015576 (UMLS CUI-2)
Item
Patient siblings with upper limb congenital malformations
integer
C0037047 (UMLS CUI [1,1])
C0749794 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Patient siblings with upper limb congenital malformations
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether the patient is a twin
integer
C0032989 (UMLS CUI [1])
C0152150 (UMLS CUI [2])
Siblings with Anomalies
Code List
Indicate whether the patient is a twin
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Number of Malformed in Multiple Pregnancy
Item
Indicate the number of children with CULA from the same pregnancy
integer
C0449788 (UMLS CUI [1,1])
C0302142 (UMLS CUI [1,2])
C0032989 (UMLS CUI [1,3])
Mother's date of birth
Item
Indicate the mother's date of birth
date
C2599455 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
Item
Indicate whether the patient was conceived through assisted fertilisation
integer
C0521305 (UMLS CUI [1])
Siblings with Anomalies
Code List
Indicate whether the patient was conceived through assisted fertilisation
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate what type of fertilisation the patient was conceived through
text
C0521305 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Indicate what type of fertilisation the patient was conceived through
Item
Indicate whether the mother is blood-related to the father (1st/2nd degree)
integer
C0009789 (UMLS CUI [1])
Siblings with Anomalies
Code List
Indicate whether the mother is blood-related to the father (1st/2nd degree)
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether the mother was diagnosed with diabetes before pregnancy
integer
C1858460 (UMLS CUI [1,1])
C0011849 (UMLS CUI [1,2])
C0332152 (UMLS CUI [1,3])
C0032961 (UMLS CUI [1,4])
Siblings with Anomalies
Code List
Indicate whether the mother was diagnosed with diabetes before pregnancy
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether the mother took medication in the first trimester of pregnancy
integer
C0032979 (UMLS CUI [1,1])
C0013227 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Indicate whether the mother took medication in the first trimester of pregnancy
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Type of medication taken in first timester
Item
Indicate what type of medication was taken during the first trimester of pregnancy
text
C0032979 (UMLS CUI [1,1])
C0013227 (UMLS CUI [1,2])
C0332307 (UMLS CUI [1,3])
Item
Indicate whether alcohol was consumed during the first trimester of pregnancy
integer
C0001948 (UMLS CUI [1,1])
C0032979 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Indicate whether alcohol was consumed during the first trimester of pregnancy
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate whether recreational drugs were consumed during the first trimester of pregnancy
integer
C0678263 (UMLS CUI [1,1])
C0032979 (UMLS CUI [1,2])
Siblings with Anomalies
Code List
Indicate whether recreational drugs were consumed during the first trimester of pregnancy
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
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