Standard Sets

Craniofacial Microsomia

Completed & Harmonized

The ICHOM Standard Set for Craniofacial microsomia 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 persons with Craniofacial microsomia. We urge all providers around the world to start measuring these outcomes to better understand how to improve the lives of their patients.

  1. Recommended to track via Paediatric Sleep Questionnaire (PSQ) and polysomnography.
  2. Recommended to track via the Intelligibility in Context Scale (ICS), Percentage of Consonants Correct (PCC), and CleftQ Speech and Feelings about Speaking Scale, and audiogram.
  3. Includes dentition, oral symptoms, mastication and occlusion. Recommended to track via DMFT, COHIP Oral Symptoms Scale, CleftQ Eating and Drinking Scale, and Cephalometrics.
  4. Includes facial profile, asymmetry, smile, ears, eyes and jaw. Recommended to track via PAT-CFM, CleftQ Appearance Scale, and Ear HrQoL tool.
  5. Includes psychometrics, sociometrics, anxiety and depression, health-related QoL, and family stress. Recommended to track via CleftQ Psychological and Social Wellbeing Scales, Young Person’s Core (YP-CORE) tool, Hospital Anxiety and Depression Scale (HADS), Craniofacial Experience Questionnaire (CFEQ), and Parental Stress Index (PSI).
ICHOM Standard Sets Craniofacial Microsomia Outcomes Wheel

Resource Documents

Craniofacial Microsomia Reference Guide
Craniofacial Microsomia Data Dictionary
Craniofacial Microsomia Flyer

Team that developed this standard

SCOTLAND
Emily Taylor | University of Edinburgh

SOUTH AFRICA
Anil Madaree | Mandela School of Medicine

SCOTLAND
Emily Taylor | University of Edinburgh

NEW ZEALAND
Nikki Mills | Starship Children’s Hospital
Melissa Keesing | Auckland District Health Board

NETHERLANDS
Linda Corel | Erasmus Medical Center
Maarten Koudstaal | Erasmus Medical Center
Sjoukje Loudon | Erasmus Medical Center
Petra Poulissen* | Laposa

UNITED KINGDOM
David Dunaway | Great Ormond Street Hospitaly
Justine O’Hara| | Great Ormond Street Hospital
Neil Bulstrode | Great Ormond Street Hospital

UNITED STATES
Bonnie Padwa | Boston Children’s Hospital
Michael Cunningham | Seattle Children’s Hospital
Kristen Lowe | Children’s Hospital of Philadelphia
Olivia Oppel | Boston Children’s Hospital

*Patient representative

ICHOM Standard Sets Craniofacial Microsomia Working Group Members

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