ID

42339

Description

ICHOM Cleft Lip and Palate data collection Version 3.0.6 Revised: March 20th, 2017 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 Cleft Lip and Palate, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Cleft Lip | Cleft Palate | Cleft Lip and Alveolus | Cleft Lip and Palate | Robin Sequence | 22q11 | CL&P Associated with Other Craniofacial Abnormalities | CL&P Associated with Other Congenital Abnormalities Treatment approaches: Audiology | Otology | Speech/Communication | Feeding/Nutrition | Plastic Surgery | Oral & Maxillofacial Surgery | Dentistry | Orthodontics | Pediatrics | Nursing | Genetics | Social Work | Psychology/Psychiatry This document contains the Post-Operative - Clinical Form. It has to be filled in after surgical intervention. Clinician reported complications measured within 30 days post-op. Collecting Patient-Reported Outcome Measure: CLEFT-Q. As there is no permission for publication of this questionnaire on this portal, only the total score will be included in this version of the standard set. Nasal Obstruction NOSE Scale-Patient . The study for development and validation of the NOSE Scale was funded by the AAO-HNS/F. If others wish to use the tool, there is no cost, but the study should be referenced: Stewart MG, Witsell DL, Smith TL, Weaver EM, Yueh B, Hannley MT. Development and validation of the Nasal Obstruction Symptom Evaluation (NOSE) scale. Otolaryngol Head Neck Surg 2004;130:157-63. COHIP Oral Symptoms Scale-Patient. The COHIP is free for all health care organizations, and a license is not needed according to ICHOM. Broder HL, McGrath C, Cisneros GJ. Questionnaire development: Face validity and item impact testing of the child oral health impact profile Community Dent Oral Epidemiol 2007; 35 Suppl 1:8-19. Intelligibility in Context Scale (ICS)-Parent. The ICS is free for all health care organizations, and a license is not needed (according to ICHOM). McLeod, S., Harrison, L. J., & McCormack, J. (2012). Intelligibility in Context Scale. Bathurst, NSW, Australia: Charles Sturt University. Available at http://www.csu.edu.au/research/multilingual-speech/ics under CC 3.0 by-nc-nd. PCC-Clinician. The PCC is free for all health care organizations, and a license is not needed. The Pittsburgh Fistula Classification System: A Standardized Scheme for the Description of Palatal Fistulas. Smith, D. M., Vecchione, L., Jiang, S., Ford, M., Deleyiannis, F. W. B., Ann Haralam, M., … Losee, J. E. (2007). The Cleft Palate-Craniofacial Journal, 44(6), 590–594. Reference: Allori, A. C., Kelley, T., Meara, J. G., Albert, A., Bonanthaya, K., Chapman, K., … Wong, K. W. (2017). A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care. The Cleft Palate-Craniofacial Journal, 54(5), 540–554 The Standard set of ICHOM was supported by the Boston Children’s Hospital, The Children’s Hospital of Philadelphia. Texas Children’s Hospital and the Great Ormond Street Hospital. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Link

http://www.ichom.org/

Keywords

Versions (5)
  1. 8/7/19 8/7/19 -
  2. 8/12/19 8/12/19 - Sarah Riepenhausen
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
  4. 4/30/20 4/30/20 - Sarah Riepenhausen
  5. 6/18/21 6/18/21 -
Copyright Holder

ICHOM

Uploaded on

June 18, 2021

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Creative Commons BY-NC 4.0
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ICHOM Cleft Lip and Palate

English

Post-Operative - 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

integer

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
Burden of treatment and complications
Description

Burden of treatment and complications

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C0009566
Record the type of operation being performed
Description

INCLUSION CRITERIA: All patients TIMING: Time of operation REPORTING SOURCE: Clinical TYPE: Free text

Data type

text

Alias
UMLS CUI [1]
C0543467
Indicate if the patient experienced any of the following complications 1 = Bleeding requiring return to OR
Description

SUPPORTING DEFINITION: - Bleeding requiring return to OR: bleeding requiring operative re-exploration to establish hemostasis; or a hematoma of sufficient size to require evacuation and washout in the operating room INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2,1]
C0019080
UMLS CUI [2,2]
C0332156
UMLS CUI [2,3]
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: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2,1]
C0019080
UMLS CUI [2,2]
C0005841
UMLS CUI [2,3]
C1514873
Indicate if the patient experienced any of the following complications 3 = Infection requiring return to OR
Description

SUPPORTING DEFINITION: - Infection requiring return to OR: cellulitis, abscess, or fasciitis requiring incision and drainage and/or irrigation and debridement; or hardware infection requiring removal or exchange; either case performed in the OR INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2,1]
C3714514
UMLS CUI [2,2]
C0332156
UMLS CUI [2,3]
C0029064
Indicate if the patient experienced any of the following complications 4 = Infection or exposure of graft material requiring return to OR for removal or replacement
Description

SUPPORTING DEFINITION: - Infection or exposure of graft material requiring return to OR for removal or replacement: exposure of any autologous graft (e.g., cartilage or bone), cadaveric allograft, or other implanted biologic material. Treatment requires return to the OR for removal and/or replacement of graft INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2,1]
C0332157
UMLS CUI [2,2]
C0181074
UMLS CUI [2,3]
C0332156
UMLS CUI [2,4]
C0029064
UMLS CUI [3,1]
C3714514
UMLS CUI [3,2]
C0181074
UMLS CUI [3,3]
C0332156
UMLS CUI [3,4]
C0029064
Indicate if the patient experienced any of the following complications 5 = Wound: complete dehiscence
Description

SUPPORTING DEFINITION: - Wound: complete dehiscence: wound-healing problem affecting the entire wound, such as abruption of the suture line due to postoperative trauma. Requires surgical repair. INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2,1]
C0259768
UMLS CUI [2,2]
C0205197
Indicate if the patient experienced any of the following complications 6 = Wound: palatal dehiscence requiring return to OR
Description

SUPPORTING DEFINITION: - Wound: palatal dehiscence requiring return to OR: necrosis and loss of the mucoperiosteal flaps during palatoplasty or the musculomucosal flaps during pharyngoplasty or sphincteroplasty INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2,1]
C0259768
UMLS CUI [2,2]
C0700374
UMLS CUI [2,3]
C0332156
UMLS CUI [2,4]
C0029064
Indicate if the patient experienced any of the following complications 7 = Wound: oronasal fistula
Description

SUPPORTING DEFINITION: - Wound: oronasal fistula: permanent (mucosalized) connection between the oropharynx and nasopharynx following palatal repair. INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2]
C1299894
Indicate if the patient experienced any of the following complications 8 = Palatal flap necrosis
Description

SUPPORTING DEFINITION: - Palatal flap necrosis: ischemic injury to one or both mucoperiosteal flaps following palatoplasty that result in partial or complete necrosis. INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2,1]
C0700374
UMLS CUI [2,2]
C4075512
Indicate if the patient experienced any of the following complications 9 = Respiratory distress: requires mechanical ventilation (major)
Description

SUPPORTING DEFINITION: - Respiratory distress: requires mechanical ventilation (major): labored breathing, tachypnea, hypopnea/apnea, or hypoxia that requires CPAP, BiPAP, or mechanical ventilation INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";""

Data type

boolean

Alias
UMLS CUI [1,1]
C0241311
UMLS CUI [1,2]
C0009566
UMLS CUI [2,1]
C0476273
UMLS CUI [2,2]
C1514873
UMLS CUI [2,3]
C0199470
Indicate the characterization of the oronasal fistula via Pittsburgh scale 1 = Type I: Bifid uvula
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";"" RESPONSE OPTION: Characterization of oronasal fistula via Pittsburgh scale

Data type

boolean

Alias
UMLS CUI [1,1]
C1299894
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C4551488
Indicate the characterization of the oronasal fistula via Pittsburgh scale 2 = Type II: Soft palate
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";"" RESPONSE OPTION: Characterization of oronasal fistula via Pittsburgh scale

Data type

boolean

Alias
UMLS CUI [1,1]
C1299894
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C0030219
Indicate the characterization of the oronasal fistula via Pittsburgh scale 3 = Type III: Junction of the soft and hard palate
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";"" RESPONSE OPTION: Characterization of oronasal fistula via Pittsburgh scale

Data type

boolean

Alias
UMLS CUI [1,1]
C1299894
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C0447423
Indicate the characterization of the oronasal fistula via Pittsburgh scale 4 = Type IV: Hard palate
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";"" RESPONSE OPTION: Characterization of oronasal fistula via Pittsburgh scale

Data type

boolean

Alias
UMLS CUI [1,1]
C1299894
UMLS CUI [1,2]
C0008902
UMLS CUI [2]
C0447423
Indicate the characterization of the oronasal fistula via Pittsburgh scale 5 = Type V: Junction of the primary and secondary palates (for Veau IV clefts)
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";"" RESPONSE OPTION: Characterization of oronasal fistula via Pittsburgh scale

Data type

boolean

Alias
UMLS CUI [1,1]
C1299894
UMLS CUI [1,2]
C0008902
UMLS CUI [2,1]
C1268540
UMLS CUI [2,2]
C0205144
UMLS CUI [2,3]
C1519217
Indicate the characterization of the oronasal fistula via Pittsburgh scale 6 = Type VI: Lingual alveolar
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";"" RESPONSE OPTION: Characterization of oronasal fistula via Pittsburgh scale

Data type

boolean

Alias
UMLS CUI [1,1]
C1299894
UMLS CUI [1,2]
C0008902
UMLS CUI [2,1]
C2349948
UMLS CUI [2,2]
C0447411
Indicate the characterization of the oronasal fistula via Pittsburgh scale 7 = Type VII: Labial alveolar
Description

INCLUSION CRITERIA: All patients TIMING: Post-operatively REPORTING SOURCE: Clinical TYPE: Multiple answer, Separate multiple entries with "";"" RESPONSE OPTION: Characterization of oronasal fistula via Pittsburgh scale

Data type

boolean

Alias
UMLS CUI [1,1]
C1299894
UMLS CUI [1,2]
C0008902
UMLS CUI [2,1]
C0023759
UMLS CUI [2,2]
C0447411
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Similar models

Post-Operative - 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
integer
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
Burden of treatment and complications
C0087111 (UMLS CUI-1)
C0009566 (UMLS CUI-2)
Operation
Item
Record the type of operation being performed
text
C0543467 (UMLS CUI [1])
Post-operative complications: Bleeding requiring return to OR
Item
Indicate if the patient experienced any of the following complications 1 = Bleeding requiring return to OR
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0019080 (UMLS CUI [2,1])
C0332156 (UMLS CUI [2,2])
C0029064 (UMLS CUI [2,3])
Post-operative complications: Bleeding requiring transfusion
Item
Indicate if the patient experienced any of the following complications 2 = Bleeding requiring transfusion
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0019080 (UMLS CUI [2,1])
C0005841 (UMLS CUI [2,2])
C1514873 (UMLS CUI [2,3])
Post-operative complications: Infection requiring return to OR
Item
Indicate if the patient experienced any of the following complications 3 = Infection requiring return to OR
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C3714514 (UMLS CUI [2,1])
C0332156 (UMLS CUI [2,2])
C0029064 (UMLS CUI [2,3])
Post-operative complications: Infection or exposure of graft material requiring return to OR for removal or replacement
Item
Indicate if the patient experienced any of the following complications 4 = Infection or exposure of graft material requiring return to OR for removal or replacement
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0332157 (UMLS CUI [2,1])
C0181074 (UMLS CUI [2,2])
C0332156 (UMLS CUI [2,3])
C0029064 (UMLS CUI [2,4])
C3714514 (UMLS CUI [3,1])
C0181074 (UMLS CUI [3,2])
C0332156 (UMLS CUI [3,3])
C0029064 (UMLS CUI [3,4])
Post-operative complications: Wound: complete dehiscence
Item
Indicate if the patient experienced any of the following complications 5 = Wound: complete dehiscence
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0259768 (UMLS CUI [2,1])
C0205197 (UMLS CUI [2,2])
Post-operative complications: Wound: palatal dehiscence requiring return to OR
Item
Indicate if the patient experienced any of the following complications 6 = Wound: palatal dehiscence requiring return to OR
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0259768 (UMLS CUI [2,1])
C0700374 (UMLS CUI [2,2])
C0332156 (UMLS CUI [2,3])
C0029064 (UMLS CUI [2,4])
Post-operative complications: Wound: oronasal fistula
Item
Indicate if the patient experienced any of the following complications 7 = Wound: oronasal fistula
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C1299894 (UMLS CUI [2])
Post-operative complications: Palatal flap necrosis
Item
Indicate if the patient experienced any of the following complications 8 = Palatal flap necrosis
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0700374 (UMLS CUI [2,1])
C4075512 (UMLS CUI [2,2])
Post-operative complications: Respiratory distress: requires mechanical ventilation (major)
Item
Indicate if the patient experienced any of the following complications 9 = Respiratory distress: requires mechanical ventilation (major)
boolean
C0241311 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0476273 (UMLS CUI [2,1])
C1514873 (UMLS CUI [2,2])
C0199470 (UMLS CUI [2,3])
Characterization of oronasal fistula via Pittsburgh scale: Bifid uvula
Item
Indicate the characterization of the oronasal fistula via Pittsburgh scale 1 = Type I: Bifid uvula
boolean
C1299894 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C4551488 (UMLS CUI [2])
Characterization of oronasal fistula via Pittsburgh scale: Soft palate
Item
Indicate the characterization of the oronasal fistula via Pittsburgh scale 2 = Type II: Soft palate
boolean
C1299894 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0030219 (UMLS CUI [2])
Characterization of oronasal fistula via Pittsburgh scale: Junction of the soft and hard palate
Item
Indicate the characterization of the oronasal fistula via Pittsburgh scale 3 = Type III: Junction of the soft and hard palate
boolean
C1299894 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0447423 (UMLS CUI [2])
Characterization of oronasal fistula via Pittsburgh scale: Hard palate
Item
Indicate the characterization of the oronasal fistula via Pittsburgh scale 4 = Type IV: Hard palate
boolean
C1299894 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0447423 (UMLS CUI [2])
Characterization of oronasal fistula via Pittsburgh scale: Junction of the primary and secondary palates
Item
Indicate the characterization of the oronasal fistula via Pittsburgh scale 5 = Type V: Junction of the primary and secondary palates (for Veau IV clefts)
boolean
C1299894 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C1268540 (UMLS CUI [2,1])
C0205144 (UMLS CUI [2,2])
C1519217 (UMLS CUI [2,3])
Characterization of oronasal fistula via Pittsburgh scale: Lingual alveolar
Item
Indicate the characterization of the oronasal fistula via Pittsburgh scale 6 = Type VI: Lingual alveolar
boolean
C1299894 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C2349948 (UMLS CUI [2,1])
C0447411 (UMLS CUI [2,2])
Characterization of oronasal fistula via Pittsburgh scale: Labial alveolar
Item
Indicate the characterization of the oronasal fistula via Pittsburgh scale 7 = Type VII: Labial alveolar
boolean
C1299894 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0023759 (UMLS CUI [2,1])
C0447411 (UMLS CUI [2,2])
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