Genetic Testing in Craniofacial Care: Development of Algorithms for Testing Patients with Orofacial Clefting, Branchial Arch Anomalies, and Craniosynostosis.

OBJECTIVE: To develop consensus-based algorithms for genetic testing in patients with common craniofacial conditions. DESIGN: An online collaborative consisting of online meetings, independent work, and feedback across groups. Setting/Participants: A collaborative of genetics and pediatrics providers from three regional craniofacial centers (four institutions). METHODS: Collaborative participants agreed upon a shared initial framework, developed algorithms independently, and presented/tested the algorithms with a national audience. Algorithms were modified based on consensus feedback. RESULTS: The collaborative group developed final algorithms for genetic testing in patients with orofacial cleft, branchial arch conditions, and craniosynostosis. CONCLUSIONS: Timely and accurate diagnosis of genetic conditions can support medical management recommendations that result in safer surgical interventions. Algorithms can help guide best-practices for testing, particularly in institutions without easy access to genetics providers.

Exploratory Qualitative Analysis of Early Literacy Engagement in Latinx Parents of a Child With a Cleft.

ABSTRACT: Literacy interventions are needed for children born with orofacial clefts, particularly for Latinx children who may experience multiple risk factors. To collect formative data for intervention design, focus groups and interviews were completed with 18 Latinx parents of children ages 13 to 49 months with orofacial clefts. Interviews focused on literacy experiences and practices. Six themes were identified through inductive qualitative analysis: child reading skills were highly valued; parents were motivated to improve on their childhood reading experiences; bilingualism was a goal for all parents; parents noted challenges in building child reading skills; reading engagement was broadly defined; and impact of cleft diagnosis was wide-reaching. Implications for intervention include a bilingual strength-based approach incorporating cleft-specific speech concerns, play, parallel online programming, behavioral strategies, and social support options. Use of telephone and online intervention with mailed materials can also help address family resource and time limitations.

Creating a Professional Ladder for Interpreters for Improvement of Care.

BACKGROUND: Children's Hospital Los Angeles (CHLA), a metropolitan academic medical center, recognized limitations in how the professional interpreters from the Diversity Services Department were used to support effective patient-provider communication across the organization. Given the importance of mitigating language and communication barriers, CHLA sought to minimize clinical and structural barriers to health care for limited English proficiency populations through a comprehensive restructuring of the Diversity Services Department. This approach entailed a new delivery model for hospital language assistance and cultural consultancy resources. METHODS: The intervention focused on restructuring the Diversity Services Department, redefining priorities, reallocating resources, and redefining the roles of the language staff positions in the department. The language staff role was redesigned to fit a four-level professional career ladder modeled after the professional career ladders commonly used in hospitals for the RN role and other professional disciplines. The approach involved creating new levels of language specialist, each with progressive requirements for performance, leadership, and accountability for patient care outcomes. Language staff in the inpatient, clinic, and emergency department settings worked alongside nurses, physicians, and other disciplines to care for a specific set of patients. RESULTS: The result of this work was a positive culture change resulting in service efficiencies, care improvements, and improved access to language services. CONCLUSIONS: A professional career ladder for language staff contributed to improving the quality and access of language services and advancing the interpreting profession by incorporating care coordination support, vital document translation, and cultural consultancy.