ID

40663

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 Post intervention - Clinical Form. It has to be filled in 6 months post intervention. 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 (3)
  1. 9/5/19 9/5/19 -
  2. 9/8/19 9/8/19 -
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

April 30, 2020

DOI

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License

Creative Commons BY-NC 4.0
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ICHOM Congenital Upper Limb Anomalies

English

Post intervention - 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
Treatment
Description

Treatment

Alias
UMLS CUI-1
C0087111
Indicate intervention type
Description

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

Data type

integer

Alias
UMLS CUI [1,1]
C0184661
UMLS CUI [1,2]
C0332307
Indicate the date of intervention
Description

Inclusion Criteria: All patients Timing: Ongoing Data Source: Clinical Type: Date by DD/MM/YYYY Response Options: DD/MM/YYYY

Data type

date

Measurement units
  • DD/MM/YYYY
Alias
UMLS CUI [1]
C2584899
DD/MM/YYYY
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
Indicate if the patient experienced any of the following complications 1 = Bleeding requiring return to Operating Room
Description

Supporting Definition: - Bleeding requiring return to Operating Room: Active bleeding requiring operative re-exploration to establish haemostasis; or a hematoma of sufficient size to require evacuation and washout in the operating room Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2,1]
C0019080
UMLS CUI [2,2]
C1514873
UMLS CUI [2,3]
C0332156
UMLS CUI [2,4]
C0029064
Indicate if the patient experienced any of the following complications 2 = Bleeding requiring transfusion
Description

Supporting Definition: - Bleeding requiring transfusion: Bleeding sufficient to cause hemodynamic stress or appreciable drop in Hgb. / Hct., requiring transfusion of blood for treatment Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2,1]
C0019080
UMLS CUI [2,2]
C1514873
UMLS CUI [2,3]
C1879316
Indicate if the patient experienced any of the following complications 3 = Cellulitis
Description

Supporting Definition: - Cellulitis: Infection of the deep dermis and subcutaneous tissue, presenting with expanding erythema, warmth, tenderness, and swelling. Oral or parenteral antibiotic therapy is required. Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2]
C0007642
Indicate if the patient experienced any of the following complications 4 = Abscess
Description

Supporting Definition: - Abscess: Infection of subcutaneous or deeper tissues, with an enclosed collection of liquefied tissue (pus). Requires drainage, local wound care, and oral or parenteral antibiotic therapy Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2]
C0000833
Indicate if the patient experienced any of the following complications 5 = Material major infection
Description

Supporting Definition: - Material major: Pin severe infection: Severe soft tissue infection involving several pins ± pin loosening, osteolysis. Ex. Fix. must be discontinued, debridement and IV antibiotics are required / severe soft tissue infection, osteomyelitis or exposure of any implanted material, requiring intravenous antibiotics and additional unplanned operative procedures Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2]
C3532546
Indicate if the patient experienced any of the following complications 6 = Complete Dehiscence
Description

Supporting Definition: - Complete dehiscence: All layers of the wound thickness are separated, revealing the underlying tissue Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2,1]
C0259768
UMLS CUI [2,2]
C0205197
Indicate if the patient experienced any of the following complications 7 = Skin graft or flap necrosis
Description

Supporting Definition: - Skin graft or flap necrosis: Complication that results in the death of the skin tissue Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2,1]
C0161955
UMLS CUI [2,2]
C0027540
UMLS CUI [3]
C4075512
Indicate if the patient experienced any of the following complications 8 = Hypertrophic or Keloid scars
Description

Supporting Definition: - Hypertrophic or Keloid scars: Keloid scars, which extend beyond the original defect/scar and persist for many years. Hypertrophic scars, remain confined to the initial defect/scar and tend to improve with time Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2,1]
C0241158
UMLS CUI [2,2]
C0333959
UMLS CUI [3]
C1546770
Indicate if the patient experienced any of the following complications 9 = Drug adverse reaction
Description

Supporting Definition: - Drug adverse reaction: Undesirable experience associated with the use of a drug in a patient during the perioperative period or hospitalisation due to CULA-related condition Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2]
C0041755
Indicate if the patient experienced any of the following complications 10 = Death
Description

Supporting Definition: - Death: Loss of life from any cause. Death within the postoperative period should be specially designated, and cause of death should be specified Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0687676
UMLS CUI [1,3]
C0184661
UMLS CUI [2]
C0011065
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]
C0030675
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
UMLS CUI [1,3]
C0749794
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Similar models

Post intervention - 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
Treatment
C0087111 (UMLS CUI-1)
Item
Indicate intervention type
integer
C0184661 (UMLS CUI [1,1])
C0332307 (UMLS CUI [1,2])
Intervention type
Code List
Indicate intervention type
CL Item
Amputation  (1)
C0002688 (UMLS CUI-1)
(Comment:en)
CL Item
Anlage Excision  (2)
C4248567 (UMLS CUI-1)
C0728940 (UMLS CUI-2)
(Comment:en)
CL Item
Arthrodesis  (3)
C0003881 (UMLS CUI-1)
(Comment:en)
CL Item
Correction/rotational osteotomy  (4)
C1947976 (UMLS CUI-1)
C0029468 (UMLS CUI-2)
C0445237 (UMLS CUI-3)
C0029468 (UMLS CUI-4)
(Comment:en)
CL Item
Direct closure of constriction rings  (5)
C1521802 (UMLS CUI-1)
C4021261 (UMLS CUI-2)
(Comment:en)
CL Item
Debulking surgery  (6)
C1706406 (UMLS CUI-1)
C0543467 (UMLS CUI-2)
(Comment:en)
CL Item
Free phalangeal transfer  (7)
C0408917 (UMLS CUI-1)
(Comment:en)
CL Item
joint contraction release  (8)
C0009918 (UMLS CUI-1)
C0012625 (UMLS CUI-2)
(Comment:en)
CL Item
Pollicisation  (9)
C0473697 (UMLS CUI-1)
(Comment:en)
CL Item
Radialisation (10)
C0408942 (UMLS CUI-1)
(Comment:en)
CL Item
Serial casting  (11)
C2348188 (UMLS CUI-1)
C2014382 (UMLS CUI-2)
(Comment:en)
CL Item
Splinting therapy  (12)
C1534709 (UMLS CUI-1)
C0087111 (UMLS CUI-2)
(Comment:en)
CL Item
Syndactyly separation and web space widening  (13)
C0039075 (UMLS CUI-1)
C0678621 (UMLS CUI-2)
C2091684 (UMLS CUI-3)
(Comment:en)
CL Item
Tendon transfer  (14)
C0039508 (UMLS CUI-1)
C1705822 (UMLS CUI-2)
(Comment:en)
CL Item
Toe to Hand transfer  (15)
C0040357 (UMLS CUI-1)
C0018563 (UMLS CUI-2)
C1705822 (UMLS CUI-3)
(Comment:en)
CL Item
Vascularised joint transfer  (16)
C0042382 (UMLS CUI-1)
C0022417 (UMLS CUI-2)
(Comment:en)
CL Item
Cryoablation  (17)
C0010408 (UMLS CUI-1)
(Comment:en)
CL Item
Embolisation  (18)
C0013931 (UMLS CUI-1)
(Comment:en)
CL Item
Endovascular laser treatment  (19)
C2936204 (UMLS CUI-1)
C0850168 (UMLS CUI-2)
(Comment:en)
CL Item
Rehabilitation  (20)
C0034991 (UMLS CUI-1)
(Comment:en)
CL Item
Sclerotherapy  (21)
C0036435 (UMLS CUI-1)
(Comment:en)
CL Item
Other (22)
C0205394 (UMLS CUI-1)
(Comment:en)
Date of intervention
Item
Indicate the date of intervention
date
C2584899 (UMLS CUI [1])
Item Group
Clinical Status
C0449440 (UMLS CUI-1)
Item
Indicate whether the patient has any comorbidities
integer
C0009488 (UMLS CUI [1])
Patient Comorbidities
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)
Post-intervention complications: Bleeding requiring return to OR
Item
Indicate if the patient experienced any of the following complications 1 = Bleeding requiring return to Operating Room
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0019080 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C0332156 (UMLS CUI [2,3])
C0029064 (UMLS CUI [2,4])
Post-intervention complications: Bleeding requiring transfusion
Item
Indicate if the patient experienced any of the following complications 2 = Bleeding requiring transfusion
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0019080 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C1879316 (UMLS CUI [2,3])
Post-intervention complications: Cellulitis
Item
Indicate if the patient experienced any of the following complications 3 = Cellulitis
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0007642 (UMLS CUI [2])
Post-intervention complications: Abscess
Item
Indicate if the patient experienced any of the following complications 4 = Abscess
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0000833 (UMLS CUI [2])
Post-intervention complications: Material major infection
Item
Indicate if the patient experienced any of the following complications 5 = Material major infection
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C3532546 (UMLS CUI [2])
Post-intervention complications: Complete Dehiscence
Item
Indicate if the patient experienced any of the following complications 6 = Complete Dehiscence
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0259768 (UMLS CUI [2,1])
C0205197 (UMLS CUI [2,2])
Post-intervention complications: Skin graft or flap necrosis
Item
Indicate if the patient experienced any of the following complications 7 = Skin graft or flap necrosis
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0161955 (UMLS CUI [2,1])
C0027540 (UMLS CUI [2,2])
C4075512 (UMLS CUI [3])
Post-intervention complications: Hypertrophic or Keloid scars
Item
Indicate if the patient experienced any of the following complications 8 = Hypertrophic or Keloid scars
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0241158 (UMLS CUI [2,1])
C0333959 (UMLS CUI [2,2])
C1546770 (UMLS CUI [3])
Post-intervention complications: Drug adverse reaction
Item
Indicate if the patient experienced any of the following complications 9 = Drug adverse reaction
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0041755 (UMLS CUI [2])
Post-intervention complications: Death
Item
Indicate if the patient experienced any of the following complications 10 = Death
boolean
C0009566 (UMLS CUI [1,1])
C0687676 (UMLS CUI [1,2])
C0184661 (UMLS CUI [1,3])
C0011065 (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])
C0030675 (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])
C0749794 (UMLS CUI [1,3])
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