ID

37554

Beschrijving

ICHOM Cleft Lip and Palate Study 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/ 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 Follow-up (22 years) - Clinical Form. It has to be filled in 22 years after Baseline index event. 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. 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.

Link

http://www.ichom.org/

Trefwoorden

Versies (3)
  1. 07-08-19 07-08-19 -
  2. 12-08-19 12-08-19 -
  3. 30-04-20 30-04-20 - Sarah Riepenhausen
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ICHOM Cleft Lip and Palate

Engels

Follow-up (22 years) - Clinical Form

1 Formulieren  
Administrative Data
Beschrijving

Administrative Data

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

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

Datatype

integer

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline
Beschrijving

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.

Datatype

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Treatment
Beschrijving

Treatment

Alias
UMLS CUI-1
C0087111
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
Beschrijving

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer

Datatype

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C1518988
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
Beschrijving

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer

Datatype

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C4696991
Indicate if the patient has been transferred to your institution after care was begun elsewhere
Beschrijving

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer

Datatype

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0184681
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
Beschrijving

INCLUSION CRITERIA: All patients TIMING: Ongoing REPORTING SOURCE: Clinical TYPE: Single Answer

Datatype

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0439787
Degree of health
Beschrijving

Degree of health

Alias
UMLS CUI-1
C0018759
Facial photographs: frontal repose, frontal smiling, both laterals, submental view
Beschrijving

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus, patients with cleft lip TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical

Datatype

boolean

Alias
UMLS CUI [1,1]
C0700364
UMLS CUI [1,2]
C0015450
Indicate if the patient had an oronasal fistula requiring repair (that has been performed/is planned)
Beschrijving

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical TYPE: Single answer

Datatype

integer

Alias
UMLS CUI [1]
C1299894
Overjet Assessment
Beschrijving

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical TYPE: Single answer

Datatype

integer

Alias
UMLS CUI [1]
C0596028
Lateral Cephalogram
Beschrijving

INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate, patients with cleft lip and alveolus TIMING: 22 years REPORTING SOURCE: Clinical TYPE: Single answer

Datatype

boolean

Alias
UMLS CUI [1]
C0407698
Indicate the percent consonants
Beschrijving

SUPPORTING DEFINITION: Speech assessment material can be found at https://clispi.org/node/15 INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Single Answer

Datatype

integer

Alias
UMLS CUI [1]
C0871699
Assess velopharyngeal competence
Beschrijving

SUPPORTING DEFINITION: Marginally incompetent: evidence of minor problems suggesting borderline closure Incompetent: evidence of significant problems usually requiring surgical management INCLUSION CRITERIA: Patients with cleft lip and palate, patients with cleft palate TIMING: 5, 12, 22 years REPORTING SOURCE: Clinical RESPONSE OPTIONS: Single Answer

Datatype

integer

Alias
UMLS CUI [1]
C4027435
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Similar models

Follow-up (22 years) - Clinical Form

1 Formulieren
Name
Type
Description | Question | Decode (Coded Value)
Datatype
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
Treatment
C0087111 (UMLS CUI-1)
Item
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
integer
C1302313 (UMLS CUI [1,1])
C1518988 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
integer
C1302313 (UMLS CUI [1,1])
C4696991 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred to your institution after care was begun elsewhere
integer
C0030704 (UMLS CUI [1,1])
C0184681 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has been transferred to your institution after care was begun elsewhere
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
integer
C0030704 (UMLS CUI [1,1])
C0439787 (UMLS CUI [1,2])
Lost to follow-up (perioperative)
Code List
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
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
C0018759 (UMLS CUI-1)
Appearance
Item
Facial photographs: frontal repose, frontal smiling, both laterals, submental view
boolean
C0700364 (UMLS CUI [1,1])
C0015450 (UMLS CUI [1,2])
Item
Indicate if the patient had an oronasal fistula requiring repair (that has been performed/is planned)
integer
C1299894 (UMLS CUI [1])
Lost to follow-up (perioperative)
Code List
Indicate if the patient had an oronasal fistula requiring repair (that has been performed/is planned)
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Overjet Assessment
integer
C0596028 (UMLS CUI [1])
Syndrome/genetic diagnosis
Code List
Overjet Assessment
CL Item
Positive overjet (>3mm) (1)
C1446409 (UMLS CUI-1)
C0596028 (UMLS CUI-2)
C0205172 (UMLS CUI-3)
C0205449 (UMLS CUI-4)
C0439200 (UMLS CUI-5)
(Comment:en)
CL Item
Positive overjet (1-3mm) (2)
C1446409 (UMLS CUI-1)
C0596028 (UMLS CUI-2)
C0205103 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
C0205449 (UMLS CUI-5)
C0439200 (UMLS CUI-6)
(Comment:en)
CL Item
Edge to edge bite (3)
C1291058 (UMLS CUI-1)
(Comment:en)
CL Item
Negative overjet (1-3mm)  (4)
C0205160 (UMLS CUI-1)
C0596028 (UMLS CUI-2)
C0205103 (UMLS CUI-3)
C0205447 (UMLS CUI-4)
C0205449 (UMLS CUI-5)
C0439200 (UMLS CUI-6)
(Comment:en)
CL Item
Negative overjet (>3mm) (5)
C0205160 (UMLS CUI-1)
C0596028 (UMLS CUI-2)
C0205172 (UMLS CUI-3)
C0205449 (UMLS CUI-4)
C0439200 (UMLS CUI-5)
(Comment:en)
Occlusion
Item
Lateral Cephalogram
boolean
C0407698 (UMLS CUI [1])
Item
Indicate the percent consonants
integer
C0871699 (UMLS CUI [1])
Question 1 of COHIP OSS
Code List
Indicate the percent consonants
CL Item
5 years: Normal (-1 s.d.) (1)
C0205451 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
12 years: Normal (-1 s.d.) (3)
C0205458 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
22 years: Normal (-1 s.d.) (5)
C4284772 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C0205307 (UMLS CUI-3)
(Comment:en)
CL Item
5 years: Not normal (<-1 s.d. = <91%) (2)
C0205451 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(Comment:en)
CL Item
12 years: Not normal (<-1 s.d. = <95%)  (4)
C0205458 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(Comment:en)
CL Item
22 years: Not normal (<-1 s.d. = <98%) (6)
C4284772 (UMLS CUI-1)
C0439234 (UMLS CUI-2)
C1298908 (UMLS CUI-3)
C0205307 (UMLS CUI-4)
(Comment:en)
Item
Assess velopharyngeal competence
integer
C4027435 (UMLS CUI [1])
Question 1 of COHIP OSS
Code List
Assess velopharyngeal competence
CL Item
Marginally incompetent (1)
C2984078 (UMLS CUI-1)
C0231190 (UMLS CUI-2)
(Comment:en)
CL Item
Incompetent (2)
C0231190 (UMLS CUI-1)
(Comment:en)
CL Item
Competent (0)
C0086035 (UMLS CUI-1)
(Comment:en)
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