We wanted to understand your experiences and the impact that your or your child’s diagnosis has had on all aspects of life. Our goal is to improve well-being and to make it the focus of the healthcare journey both now and in the future.

The CARE Team enrolled 1) caregivers of a child (of any age) with craniofacial microsomia and 2) adults with craniofacial microsomia. We considered craniofacial microsomia to include microtia, hemifacial microsomia, Goldenhar syndrome, and Oculo-Auriculo-Vertebral Spectrum (OAVS).

Participation included a one-time 30 minute online survey. This survey formed part of Study 2 surveying the impact of craniofacial microsomia. The survey was developed from the interviews with participants of The CARE Interview Study (Study 1). The key themes from these interviews were synthesized and used to develop the survey topics.  A big thank you to everybody who took part in The CARE Interview Study (Study 1), you all played a key role in the survey development.

The survey was available across 5 different English-speaking countries: Australia, Canada, New Zealand, United Kingdom and United States of America.