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Craniofacial Microsomia

The standard set

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).

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

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

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