Cleft Lip & Palate

Cleft Lip & Palate

The ICHOM Standard Set for Cleft Lip & Palate is the result of hard work by a group of leading physicians, measurement experts and patients. It is our recommendation of the outcomes that matter most to patients with cleft lip & palate. We urge all providers around the world to start measuring these outcomes to better understand how to improve the lives of their patients.

Cleft Lip & Palate
1 Includes number of interventions requiring anesthesia
2 Includes bleeding requiring return to OR, bleeding requiring transfusion, infection requiring return to OR, infection or exposure of graft material requiring return to OR for removal or replacement, wound: complete dehiscence, wound: palatal dehiscence requiring return to OR, palatal flap necrosis, wound: oronasal fistula, respiratory distress: requires mechanical ventilation (major), LRI, death, and the number of hospitalized days following a procedure
3 Includes percentile on growth chart and change in percentile between birth and 3 months
4 Recommended to track via Cleft Q Face, Jaw, and Dental Appearance Scales along with facial photographs
5 Recommended to track via Cleft Q Eating and Drinking Scales
6 Recommended to track via the DMFT, the COHIP Oral Symptoms Scale, the 5 Year Index, the GOSLON, and lateral cephalogram
7 Includes articulation, intelligibility, and velopharyngeal competence. Recommended to track via the modified PCC, the Velopharyngeal Competence Scale, the Intelligibility in Context Scale, and the Cleft Q Speaking and Speech Scales
8 Recommended to track via the Cleft Q Social Life and School Life Scales and the Cleft Q How Do You Feel Scale.


© 2015 ICHOM. All rights reserved. When using this set of outcomes, or quoting therefrom, in any way, we solely require that you always make a reference to ICHOM as the source so that this organization can continue its work to define more standard outcome sets.

Team that developed this standard

Australia

Andrew Heggie | Royal Children’s Hospital
Elizabeth Rose | Royal Children’s Hospital

Canada

John Daskalogiannakis | SickKids
Cindy Guernsey | SickKids
Karen Wong | SickKids

India

Krishnamurthy Bonanthaya | Mahaveer Jain Hospital
Rajiv Kuchhal*

Netherlands

Henrietta de Gier | Erasmus Medical Center
Maarten Koudstaal | Erasmus Medical Center

Spain

Asteria Albert | Hospital Sant Joan de Deu

Sweden

Anette Lohmander | Karolinska Institutet

United Kingdom

Yin Jones* Loshan Kangesu | Great Ormond Street Hospital
Guy Thorburn | Great Ormond Street Hospital
Simon Van Eeden | North West England, Isle of Man, and North Wales Cleft Lip & Palate Network
Chris Williams**

United States

Alexander Allori | Duke Children's Hospital
Kathy Chapman | Americleft
Michael Cunningham | Seattle Children's Hospital
Cristina Hernandez | Texas Children’s Hospital
Oksana Jackson | Children’s Hospital of Philadelphia
Rusty Long | Americleft
Leanne Magee | Children’s Hospital of Philadelphia
John Meara | Boston Children’s Hospital
Laura Monson | Texas Children’s Hospital
Tom Sitzman | Cincinnati Children’s Hospital
Jesse Taylor | Children’s Hospital Of Philadelphia
John Wirthlin | Texas Children’s Hospital

*Parent representative **Patient representative

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Reference Guide

A complete overview of the ICHOM Standard Set, including definitions for each measure and selected PROM instruments, time points for collection, and associated risk factors is available here:

Version 3.0.5: March 1st, 2017

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How to measure?

Interested in measuring the ICHOM Standard Set? Learn how to measure.