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Parental Reports of Intervention Services and Prevalence of Teasing in a Multinational Craniofacial Microsomia
Alexis L Johns1, Daniela V Luquetti2, Carrie L Heike2
1Children's Hospital Los Angeles and University of Southern California, Los Angeles, CA.
Insights
Children with craniofacial microsomia (CFM) face educational and social challenges. Intervention access and teasing frequency varied significantly between the US and South America, highlighting disparities in care for these children.
Area of Science:
- Pediatric medicine
- Genetics and developmental biology
- Social and behavioral sciences
Background:
- Craniofacial microsomia (CFM) presents significant challenges for affected children, impacting their educational and social well-being.
- Multinational studies are crucial for understanding global disparities in healthcare and support services for rare conditions like CFM.
Purpose of the Study:
- To investigate the availability and utilization of intervention services for children with craniofacial microsomia (CFM) across different countries.
- To determine the prevalence and characteristics of teasing experienced by children with CFM.
Main Methods:
- A questionnaire was administered to caregivers of 169 children (ages 3-18) with CFM in the US and South America.
- Data were supplemented with information from medical charts and photographs to assess intervention access and clinical features.
- Prevalence of hearing loss, hearing aid use, diagnosis awareness, and teasing experiences were analyzed.
Main Results:
- Children with CFM often have microtia, mandibular hypoplasia, and hearing loss, with 53% using hearing aids.
- Access to intervention services was significantly higher in the US (80%) compared to South America (48%), with special education services provided to 48% of US students versus 4% in South America.
- Teasing was reported by 41% of children, beginning around age 6, primarily occurring in school settings.
Conclusions:
- Significant disparities exist in intervention service access for children with craniofacial microsomia (CFM) between the US and South America.
- Early screening for developmental, academic, and psychosocial needs is essential, given diagnosis awareness by age 4 and teasing onset by age 6.
- Healthcare providers should proactively facilitate access to necessary services and psychosocial support for children with CFM and their families.
Abstract:
Children with craniofacial microsomia (CFM) are at increased risk for educational and social concerns. This study describes intervention services and frequency of teasing in a multinational population of children with CFM. Caregivers of children with CFM ages 3 to 18 years in the US and South America were administered a questionnaire. Additional information was gathered from medical charts and photographs. Participants (N = 169) had an average age of 10.1 ± 6.2 years, were primarily male (60%), and from the US (46%) or Colombia (32%). Most participants had microtia and mandibular hypoplasia (70%). They often had unilateral (71%) or bilateral (19%) hearing loss and 53% used a hearing aid. In the US, special education services were provided for 48% of participants enrolled in school; however, similar services were rare (4%) in South America and reflect differences in education systems. Access to any intervention service was higher in the US (80%) than in South America (48%). Caregivers reported children showed diagnosis awareness by an average age of 4.4 ± 1.9 years. Current or past teasing was reported in 41% of the children, starting at a mean age of 6.0 ± 2.4 years, and most often took place at school (86%). As half of the US participants received developmental and academic interventions, providers should screen for needs and facilitate access to services. Given diagnosis awareness at age 4 and teasing at age 6, providers are encouraged to assess for psychosocial concerns and link to resources early in treatment.
