Answered Questions: Monthly News for the Disability Community for January 2019

Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: What are craniofacial anomalies? This edition of Answered Questions defines the term craniofacial abnormalities and includes a parents’ guide to speech-language development and treatment for children with cleft lip and palate and articles on the quality of life of people with orofacial clefts throughout the lifespan, cleft palate and speech evaluation, orthodontic treatment, speech therapy as a summer camp, and facial asymmetry. More about Answered Questions.

What are Craniofacial Anomalies?

According to MedlinePlus, the term craniofacial is a “medical term that relates to the bones of the skull and face.” So, craniofacial abnormalities (CFAs)  are “birth defects of the face or head.” Most craniofacial abnormalities affect how a person’s face or head looks and many may also affect other parts of the body. Some people with CFAs can also have intellectual disabilities; hearing loss; and vision, speech, and swallowing problems. Treatment for a CFA depends on the type of abnormality and plastic and reconstructive surgeries may help the person’s appearance. CFAs include cleft lip and palate, which are among the most common; however, there are others that are very rare, which may include Apert Syndrome, Crouzon Syndrome, Frontonasal Dysplasia, Hemifacial Mocrosomia/Goldenhar Syndrome, Pierre Robin Sequence, and Treacher Collins Syndrome.

From the NARIC Collection:

The book, Children with cleft lip and palate: A parents’ guide to early speech-language development and treatment (R09370) (in English), offers guidance and support for parents of children with cleft lip, cleft palate, or cleft lip/palate and helps them understand the choices available for treatment and intervention. The authors provide parents methods of boosting their child’s speech development through the use of games and books, helpful strategies, illustrations of cleft repair procedures, photos of equipment, and recommended resources to empower parents to get started on addressing speech issues for very young children and other issues for school-aged children.

The article, Quality of life among children, adolescents and adults with orofacial clefts (O20648) (in English), reviews the literature that examines the quality of life among children, youth, and adults with orofacial clefts. The authors discuss how prevalence rates by ethnic, geographical, and socio-economic factors, and the general health status of the mother. The results of the review related to the quality of life of people with orofacial clefts are inconsistent and there is evidence that the repair of orofacial clefts does not necessarily lead to unfavorable psychosocial outcomes.

The article, Cleft palate-speech evaluation (O20430) (in English), summarizes the evaluation of speech and language disorders in people with a cleft lip and/or palate. Several protocols and methods exist for evaluation speech and language assessment in this population that includes perceptual speech assessments, intraoral examinations, language assessments, articulation tests, and more. The article concludes with a summary of the pros and cons of each evaluation.

Interventions:

The article, Orthodontic treatment in children with congenital craniofacial malformations, discusses the frequency of congenital craniofacial and oral cavity anomalies and the efficacy and/or effectiveness and safety of medical, surgical, and rehabilitative treatments that are most commonly used today. The study found that cleft palate can affect one in 500-700 births and that a multidisciplinary approach is required in order to ensure maximum reliability in the outcome of treatment. The researchers suggest long-term follow-ups in order to assess the results of interventions in terms of effectiveness, quality of life, and social integration.

Rehabilitation:

The article, Summer school speech therapy for children with clef palate and language disorder (abstract in English, article available in Spanish), discusses a study of two modalities of speech intervention in children with cleft palate and associated linguistic impairments: a conventional approach that provided speech therapy twice a week and a speech summer camp for a period of three weeks. The researchers found that speech summer camp is a reliable and efficient method to provide speech therapy for children with cleft palate and associated language disorders.

Facial Asymmetry:

HealthyChildren.org provides information to people with CFAs and their families on facial asymmetry conditions in children. These conditions include craniofacial macrosomia, congenital facial nerve palsy, and acquired facial nerve palsy. They also provide information on treatments and pediatric plastic surgeons, guidelines for referral to pediatric surgical specialists, and more.

Resources:

  • The National Institutes of Health (NIH) has information on cleft lip or palate that include statistics from the Centers for Disease Control and Prevention (CDC), the causes of cleft lip and palate, diagnosis, treatment, helpful tips, and additional resources.
  • The Mexican Association of Cleft Lift and Palate and Facial Skull Anomalies advocates for the professional care of all Mexican children with a diagnosis of cleft lip and palate, with the aim of helping children and adults with CFAs be fully included in society. The association is made up of healthcare professionals dedicated to the comprehensive care of children and adults with CFAs. The association provides academic sessions throughout the year to help professionals keep up-to-date on the latest treatments, different types of CFAs, etc.
  • The Children’s Craniofacial Association (CCA) (in English) is a national, non-profit organization that addresses the medical, financial, psychosocial, emotional, and education concerns related to craniofacial conditions. CCA provides programs and services that include disseminating information to people with craniofacial anomalies, their families, health care providers, and the public; provides emotional support and identifies resources for people with craniofacial anomalies; and helps individuals with craniofacial anomalies and their families to network with support groups and/or others with similar conditions. CCA also provides information and support (in English) for specific conditions.
  • The Cleft Palate Foundation has published an information sheet on how to choose a team of experts in cleft palates or other craniofacial anomalies. The info sheet discusses how the care team should work together, how many and what types of specialists could be on your child’s team, the requirements and experience of members of the team, how to communicate with the team, and more.

Further Research:

REHABDATA:

PubMed:

International:

About Answered Questions

Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.

About mpgarcia

I'm the Bilingual Information/Media Specialist at NARIC.
This entry was posted in Publications, Respuestas a las Preguntas, Uncategorized and tagged , , , , , , , , , , , , , . Bookmark the permalink.

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