ID

38357

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 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 This document contains the Follow-up, 6 months, 1 and 2 years - Clinical Form. It has to be filled in 6 months, 1 and 2 years after Patient's entry into set. Note: the goniometrie only has to be filled in for one/two years old children. 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 (3)
  1. 10/12/19 10/12/19 -
  2. 10/23/19 10/23/19 - Sarah Riepenhausen
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

October 12, 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 months, 1 and 2 years - Clinical 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
Clinical Status
Description

Clinical Status

Alias
UMLS CUI-1
C0449440
Indicate whether the patient has any comorbidities
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0009488
Indicate if the patient has any of the following comorbidities 0 = No other diseases
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C1298908
UMLS CUI [2,2]
C2359476
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C3277906
UMLS CUI [3,1]
C0018787
UMLS CUI [3,2]
C1704258
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0042066
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0042066
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0424605
UMLS CUI [3]
C0851265
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0004936
UMLS CUI [3]
C0004930
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2]
C0009450
UMLS CUI [3,1]
C0040549
UMLS CUI [3,2]
C0012634
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0521362
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0521362
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 7 = Other musculoskeletal anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0026860
UMLS CUI [2,2]
C3887504
UMLS CUI [3,1]
C0026860
UMLS CUI [3,2]
C1704258
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0205394
UMLS CUI [2,2]
C0037303
UMLS CUI [2,3]
C0024947
UMLS CUI [2,4]
C1704258
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C2709248
UMLS CUI [2,2]
C1704258
UMLS CUI [3]
C1709770
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0279810
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0279810
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0205470
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0205470
UMLS CUI [3,2]
C3887504
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
Description

Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"

Data type

boolean

Alias
UMLS CUI [1,1]
C1521725
UMLS CUI [1,2]
C0009488
UMLS CUI [2,1]
C0027853
UMLS CUI [2,2]
C1704258
UMLS CUI [3,1]
C0027853
UMLS CUI [3,2]
C3887504
Burden of Care to Patient
Description

Burden of Care to Patient

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C2828008
Number of appointments with the clinical team (e.g. hospital, rehabilitation) for management of CULA
Description

Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0237753
UMLS CUI [1,2]
C0586344
UMLS CUI [1,3]
C0749794
Time spent in hospital from date of admission to date of discharge (days)
Description

Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value

Data type

integer

Measurement units
  • days
Alias
UMLS CUI [1,1]
C0019994
UMLS CUI [1,2]
C0023303
days
Length of postoperative rehabilitation from date of surgery to date of discharge (days)
Description

Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value

Data type

integer

Measurement units
  • days
Alias
UMLS CUI [1,1]
C1444754
UMLS CUI [1,2]
C0034991
UMLS CUI [1,3]
C0332282
UMLS CUI [1,4]
C0032790
days
Number of unplanned 30-day hospital readmissions after the first reconstructive surgery for CULA
Description

Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0600290
UMLS CUI [1,2]
C3854240
Degree of Health
Description

Degree of Health

Alias
UMLS CUI-1
C0018759
Indicate which side the malformation is
Description

Note: changes have been made to the original format. In the original version of the standard set you can find items for each the right and the left affected side. In this version of the standard set there is only the general wording. Fill in for each side affected. Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C3166323
UMLS CUI [1,2]
C0302142
The child is able to use the pincer grasp on the left side
Description

Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0517085
UMLS CUI [1,2]
C0205091
The child is able to use the pincer grasp on the right side
Description

Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0517085
UMLS CUI [1,2]
C0205090
The child is able to use the lateral pincer grasp on the left side
Description

Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0205093
UMLS CUI [1,2]
C0517085
UMLS CUI [1,3]
C0205091
The child is able to use the lateral pincer grasp on the right side
Description

Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0205093
UMLS CUI [1,2]
C0517085
UMLS CUI [1,3]
C0205090
The child is able to use the tripod pinch on the left side
Description

Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0085732
UMLS CUI [1,2]
C1524063
UMLS CUI [1,3]
C0556963
UMLS CUI [1,4]
C0205091
The child is able to use the tripod pinch on the right side
Description

Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0085732
UMLS CUI [1,2]
C1524063
UMLS CUI [1,3]
C0556963
UMLS CUI [1,4]
C0205090
The child is able to open their hand completely on the left side
Description

Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0562172
UMLS CUI [1,2]
C0205197
UMLS CUI [1,3]
C0175566
UMLS CUI [1,4]
C0205091
The child is able to open their hand completely on the right side
Description

Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0562172
UMLS CUI [1,2]
C0205197
UMLS CUI [1,3]
C0175566
UMLS CUI [1,4]
C0205090
The child is able to make a full fist on the left side
Description

Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0562119
UMLS CUI [1,2]
C0205091
The child is able to make a full fist on the right side
Description

Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0562119
UMLS CUI [1,2]
C0205090
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the left side
Description

Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C4055539
UMLS CUI [1,2]
C0517085
UMLS CUI [1,3]
C0205091
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the right side
Description

Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C4055539
UMLS CUI [1,2]
C0517085
UMLS CUI [1,3]
C0205090
The child is able to pick up a small toy with one hand on the left side
Description

Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C4055539
UMLS CUI [1,2]
C0040565
UMLS CUI [1,3]
C0205171
UMLS CUI [1,4]
C0018563
UMLS CUI [1,5]
C0205091
The child is able to pick up a small toy with one hand on the right side
Description

Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C4055539
UMLS CUI [1,2]
C0040565
UMLS CUI [1,3]
C0205171
UMLS CUI [1,4]
C0018563
UMLS CUI [1,5]
C0205090
The child is able to pick up a small toy with the tips of their thumb and fingers on the left side
Description

Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C4055539
UMLS CUI [1,2]
C0040565
UMLS CUI [1,3]
C0517085
UMLS CUI [1,4]
C0205091
The child is able to pick up a small toy with the tips of their thumb and fingers on the right side
Description

Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C4055539
UMLS CUI [1,2]
C0040565
UMLS CUI [1,3]
C0517085
UMLS CUI [1,4]
C0205090
Degree of health - Goniometrie
Description

Degree of health - Goniometrie

Alias
UMLS CUI-1
C0018759
UMLS CUI-2
C1721021
Indicate the degrees achieved
Description

Note: This item only has to be filled in for one/two years old children Inclusion Criteria: Age 1-18 Timing: 1Y, 2Y, 6Y, EOC Data Source: Clinical Type: Numerical Response Options: Numerical value

Data type

text

Alias
UMLS CUI [1]
C0080078
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Similar models

Follow-up, 6 months, 1 and 2 years - Clinical 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
Clinical Status
C0449440 (UMLS CUI-1)
Item
Indicate whether the patient has any comorbidities
integer
C0009488 (UMLS CUI [1])
Pincer grasp
Code List
Indicate whether the patient has any comorbidities
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Comorbidities of paediatric patient: No other disease
Item
Indicate if the patient has any of the following comorbidities 0 = No other diseases
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C1298908 (UMLS CUI [2,1])
C2359476 (UMLS CUI [2,2])
Comorbidities of paediatric patient: Cardiac anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 1 = Cardiac anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C3277906 (UMLS CUI [2])
C0018787 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities of paediatric patient: GU anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 2 = GU anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0042066 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0042066 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Developmental delay or learning difficulty
Item
Indicate if the patient has any of the following comorbidities 3 = Developmental delay or learning difficulty
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0424605 (UMLS CUI [2])
C0851265 (UMLS CUI [3])
Comorbidities of paediatric patient: Psychiatric or behavior disorder
Item
Indicate if the patient has any of the following comorbidities 4 = Psychiatric or behavior disorder
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0004936 (UMLS CUI [2])
C0004930 (UMLS CUI [3])
Comorbidities of paediatric patient: Infection or toxin mediated disease
Item
Indicate if the patient has any of the following comorbidities 5 = Infection or toxin mediated disease
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0009450 (UMLS CUI [2])
C0040549 (UMLS CUI [3,1])
C0012634 (UMLS CUI [3,2])
Comorbidities of paediatric patient: GI anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 6 = GI anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0521362 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0521362 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Other musculoskeletal anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 7 = Other musculoskeletal anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0026860 (UMLS CUI [2,1])
C3887504 (UMLS CUI [2,2])
C0026860 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Other craniomaxillofacial anomalies
Item
Indicate if the patient has any of the following comorbidities 8 = Other craniomaxillofacial anomalies
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0205394 (UMLS CUI [2,1])
C0037303 (UMLS CUI [2,2])
C0024947 (UMLS CUI [2,3])
C1704258 (UMLS CUI [2,4])
Comorbidities of paediatric patient: Pulmonary anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 9 = Pulmonary anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C2709248 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C1709770 (UMLS CUI [3])
Comorbidities of paediatric patient: Hematological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 10 = Hematological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0279810 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0279810 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Immunological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 11 = Immunological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0205470 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0205470 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Comorbidities of paediatric patient: Neurological anomalies or dysfunction
Item
Indicate if the patient has any of the following comorbidities 12 = Neurological anomalies or dysfunction
boolean
C1521725 (UMLS CUI [1,1])
C0009488 (UMLS CUI [1,2])
C0027853 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0027853 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
Item Group
Burden of Care to Patient
C0087111 (UMLS CUI-1)
C2828008 (UMLS CUI-2)
Number of hospital appointments
Item
Number of appointments with the clinical team (e.g. hospital, rehabilitation) for management of CULA
integer
C0237753 (UMLS CUI [1,1])
C0586344 (UMLS CUI [1,2])
C0749794 (UMLS CUI [1,3])
Length of hospital stay
Item
Time spent in hospital from date of admission to date of discharge (days)
integer
C0019994 (UMLS CUI [1,1])
C0023303 (UMLS CUI [1,2])
Length of post-operative rehabilitation
Item
Length of postoperative rehabilitation from date of surgery to date of discharge (days)
integer
C1444754 (UMLS CUI [1,1])
C0034991 (UMLS CUI [1,2])
C0332282 (UMLS CUI [1,3])
C0032790 (UMLS CUI [1,4])
Hospital readmissions
Item
Number of unplanned 30-day hospital readmissions after the first reconstructive surgery for CULA
integer
C0600290 (UMLS CUI [1,1])
C3854240 (UMLS CUI [1,2])
Item Group
Degree of Health
C0018759 (UMLS CUI-1)
Item
Indicate which side the malformation is
integer
C3166323 (UMLS CUI [1,1])
C0302142 (UMLS CUI [1,2])
Affected Side
Code List
Indicate which side the malformation is
CL Item
Left  (1)
C0205091 (UMLS CUI-1)
(Comment:en)
CL Item
Right  (2)
C0205090 (UMLS CUI-1)
(Comment:en)
CL Item
Both (3)
C1706086 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the pincer grasp on the left side
integer
C0517085 (UMLS CUI [1,1])
C0205091 (UMLS CUI [1,2])
Pincer grasp
Code List
The child is able to use the pincer grasp on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the pincer grasp on the right side
integer
C0517085 (UMLS CUI [1,1])
C0205090 (UMLS CUI [1,2])
Pincer grasp
Code List
The child is able to use the pincer grasp on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the lateral pincer grasp on the left side
integer
C0205093 (UMLS CUI [1,1])
C0517085 (UMLS CUI [1,2])
C0205091 (UMLS CUI [1,3])
Pincer grasp
Code List
The child is able to use the lateral pincer grasp on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the lateral pincer grasp on the right side
integer
C0205093 (UMLS CUI [1,1])
C0517085 (UMLS CUI [1,2])
C0205090 (UMLS CUI [1,3])
Pincer grasp
Code List
The child is able to use the lateral pincer grasp on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the tripod pinch on the left side
integer
C0085732 (UMLS CUI [1,1])
C1524063 (UMLS CUI [1,2])
C0556963 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
Pincer grasp
Code List
The child is able to use the tripod pinch on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to use the tripod pinch on the right side
integer
C0085732 (UMLS CUI [1,1])
C1524063 (UMLS CUI [1,2])
C0556963 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
Pincer grasp
Code List
The child is able to use the tripod pinch on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to open their hand completely on the left side
integer
C0562172 (UMLS CUI [1,1])
C0205197 (UMLS CUI [1,2])
C0175566 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
Pincer grasp
Code List
The child is able to open their hand completely on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to open their hand completely on the right side
integer
C0562172 (UMLS CUI [1,1])
C0205197 (UMLS CUI [1,2])
C0175566 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
Pincer grasp
Code List
The child is able to open their hand completely on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to make a full fist on the left side
integer
C0562119 (UMLS CUI [1,1])
C0205091 (UMLS CUI [1,2])
Pincer grasp
Code List
The child is able to make a full fist on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to make a full fist on the right side
integer
C0562119 (UMLS CUI [1,1])
C0205090 (UMLS CUI [1,2])
Pincer grasp
Code List
The child is able to make a full fist on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the left side
integer
C4055539 (UMLS CUI [1,1])
C0517085 (UMLS CUI [1,2])
C0205091 (UMLS CUI [1,3])
Pincer grasp
Code List
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the right side
integer
C4055539 (UMLS CUI [1,1])
C0517085 (UMLS CUI [1,2])
C0205090 (UMLS CUI [1,3])
Pincer grasp
Code List
The child is able to pick up small objects, the size of a pea, with the tips of their thumb and fingers on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up a small toy with one hand on the left side
integer
C4055539 (UMLS CUI [1,1])
C0040565 (UMLS CUI [1,2])
C0205171 (UMLS CUI [1,3])
C0018563 (UMLS CUI [1,4])
C0205091 (UMLS CUI [1,5])
Pincer grasp
Code List
The child is able to pick up a small toy with one hand on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up a small toy with one hand on the right side
integer
C4055539 (UMLS CUI [1,1])
C0040565 (UMLS CUI [1,2])
C0205171 (UMLS CUI [1,3])
C0018563 (UMLS CUI [1,4])
C0205090 (UMLS CUI [1,5])
Pincer grasp
Code List
The child is able to pick up a small toy with one hand on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up a small toy with the tips of their thumb and fingers on the left side
integer
C4055539 (UMLS CUI [1,1])
C0040565 (UMLS CUI [1,2])
C0517085 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
Pincer grasp
Code List
The child is able to pick up a small toy with the tips of their thumb and fingers on the left side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
The child is able to pick up a small toy with the tips of their thumb and fingers on the right side
integer
C4055539 (UMLS CUI [1,1])
C0040565 (UMLS CUI [1,2])
C0517085 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
Pincer grasp
Code List
The child is able to pick up a small toy with the tips of their thumb and fingers on the right side
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item Group
Degree of health - Goniometrie
C0018759 (UMLS CUI-1)
C1721021 (UMLS CUI-2)
Joint range of motion
Item
Indicate the degrees achieved
text
C0080078 (UMLS CUI [1])
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