Table 2.
Diagnosis characteristics and health care of individuals with CFM (N = 51)
| n | % | |
|---|---|---|
| Craniofacial Diagnosis* | ||
| Microtia | 43 | 84 |
| Hemifacial Microsomia (HFM) | 30 | 59 |
| Goldenhar Syndrome | 11 | 22 |
| Craniofacial Microsomia (CFM) | 10 | 20 |
| Oculo Auriculo Vertebral Syndrome (OAVS) | 4 | 8 |
| Other | 3 | 6 |
| Age at diagnosis | ||
| At birth | 36 | 74 |
| 0–6 months | 9 | 18 |
| 6 months - 3 years | 3 | 6 |
| ≥4 years | 1 | 2 |
| Not reported | 2 | -- |
| Features | ||
| Microtia | 44 | 86 |
| Aural atresia | 40 | 78 |
| Facial asymmetry | 38 | 75 |
| Skin tags (preauricular or facial) | 22 | 43 |
| Vertebral/rib anomalies | 6 | 12 |
| Congenital heart disease | 6 | 12 |
| Epibulbar dermoid | 5 | 10 |
| Cleft lip and/or cleft palate | 5 | 10 |
| Kidney anomalies | 5 | 10 |
| Lateral oral cleft | 4 | 8 |
| Upper eyelid cleft | 2 | 4 |
| Other | 15 | 29 |
| Treatment at craniofacial clinic | ||
| Yes | 39 | 77 |
| No | 9 | 18 |
| Don't know | 3 | 6 |
| Providers seen | ||
| Audiology | 50 | 98 |
| Otolaryngology | 37 | 73 |
| Plastic surgery | 36 | 71 |
| Dentistry | 34 | 67 |
| Ophthalmology | 25 | 49 |
| General surgery | 25 | 49 |
| Geneticist | 23 | 45 |
| Genetic counselor | 21 | 41 |
| Orthodontics | 21 | 41 |
| Cardiology | 15 | 29 |
| Nephrology | 12 | 24 |
| Social work | 12 | 24 |
| Gastroenterology | 8 | 16 |
| Sleep medicine | 8 | 16 |
| Urology | 7 | 14 |
| Psychology | 6 | 12 |
| Neurology | 5 | 10 |
| Orthopedics | 5 | 10 |
| Dermatology | 4 | 8 |
| Pulmonary medicine | 4 | 8 |
| Endocrinology | 3 | 6 |
| Neurodevelopmental medicine | 2 | 4 |
| Neurosurgery | 2 | 4 |
| Use of Hearing aids | ||
| Yes, currently uses aid | 21 | 41 |
| Yes, in the past, not currently using aid | 20 | 39 |
| No hearing problem | 10 | 20 |
| Therapy interventions | ||
| Current | 16 | 31 |
| Past | 24 | 47 |
| Never | 17 | 33 |
| Types of therapy interventions utilized | ||
| Speech therapy | 27 | 53 |
| Physical therapy | 12 | 24 |
| Occupational therapy | 10 | 20 |
| Child-focused mental health treatment for caregivers/family | 5 | 10 |
*
Totals exceed 100% as some respondents selected more than one diagnosis