Cleft Lip & Palate

The standard set

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.

Implement with ICHOM

STANDARD SET MATERIALS

Standard Set materials have moved to ICHOM Connect and are still available free of charge. Please log in or register to gain access to unlimited ICHOM resources at a single click of a button. There, you can also indicate your interest in receiving updates about and implementing the Standard Set.

Available materials:

Flyer – a brief overview of the most important outcomes for patients relating to this ICHOM Standard Set.
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.
Data Dictionary – an index of the outcomes and case-mix variables included in the standard set, how to code them, and the information you need to collect when implementing the outcomes in practice.
Press Release
Published Articles
Additional materials

ICHOM Connect

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

* Parent representative ** Patient representative

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Cleft Lip & Palate

The standard set

STANDARD SET MATERIALS