Standard Sets

Cleft Lip & Palate

Completed & Harmonized

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.

  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.
ICHOM Standard Sets Cleft Lip and Palate Outcomes Wheel

Resource Documents

Cleft Lip Palate Reference Guide
Cleft Lip Palate Data Dictionary
Cleft Lip & Palate Gap Analysis Tool
Cleft Lip & Palate – A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care
Cleft Lip & Palate Flyer
Cleft Lip and Palate Whitepaper

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

ICHOM Standard Sets Cleft Lip and Palate Working Group Members

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