The ICHOM Set of Patient-Centered Outcome Measures 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.
- Includes number of interventions requiring anesthesia
- 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
- Includes percentile on growth chart and change in percentile between birth and 3 months
- Recommended to track via Cleft Q Face, Jaw, and Dental Appearance Scales along with facial photographs
- Recommended to track via Cleft Q Eating and Drinking Scales
- Recommended to track via the DMFT, the COHIP Oral Symptoms Scale, the 5 Year Index, the GOSLON, and lateral cephalogram
- 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
- Recommended to track via the Cleft Q Social Life and School Life Scales and the Cleft Q How Do You Feel Scale.
Team that developed this set
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
Are you implementing ICHOM Sets?
If your are implementing ICHOM Sets, please help us understand more about your journey by filling in our Implementation Survey. Click on the link below to complete:
Implementation Map
We would like to add you to our Implementation Map if you are implementing or have implemented ICHOM Sets. Please click on the button below for more information.