Project Details
Description
PROJECT SUMMARY/ABSTRACT
Orofacial clefts are among the most common congenital conditions in the U.S., occurring in approximately one
in every 800 births. Children with cleft palate with or without cleft lip (CP±L) require interdisciplinary care from
infancy through adulthood to improve speech, facial appearance, and physical and psychosocial health. Cleft-
related treatments are burdensome for affected children and their families, and lifetime healthcare costs are
estimated at nearly $700 million U.S. dollars annually. Treatment guidelines for children CP± L are primarily
based on clinical expertise and provide wide latitude in the types and timing of assessments and interventions.
Although the American Cleft Palate-Craniofacial Association recommends that all cleft teams include a
psychosocial professional to address the mental health, quality of life, emotional, behavioral, and social needs
of children with CP±L, the types of services vary greatly across centers. In addition, it remains unknown which
children with CP±L are at greatest risk for poor health and psychosocial outcomes and which demographic
(e.g., race), medical (e.g., cleft type, timing of diagnosis) and contextual factors (e.g., caregiver stress)
contribute to these risks. Consequently, there is limited evidence to inform the provision of timely and effective
interventions to support the long-term mental and physical health of children with CP±L and their families. This
project will address this gap by partnering with The Cleft Palate Registry/Research Outcomes Network
(CORNET; NIDCR R01DE02749). CORNET is the largest U.S. prospective study in cleft care to date and
focuses on surgical and speech outcomes (pre-palate repair through 3 years of age) in a cohort of infants (N =
1514) with CP±L across 16 geographically diverse cleft centers. Leveraging CORNET and an interdisciplinary
team of investigators with expertise in cleft care outcomes, we propose to evaluate psychosocial and health
outcomes in young children with CP±L and their caregivers through two new studies: 1) a cross-sectional study
[N = 500] of medical and demographic factors predictive of health and psychosocial outcomes; and 2) a
longitudinal, mixed methods study [N = 200] to evaluate contextual predictors of psychosocial and health
outcomes over time. Specific aims include: 1) examine associations between medical and demographic factors
and health (growth/BMI) and psychosocial outcomes (child health-related quality of life, adjustment) in children
ages 2-5 years enrolled in CORNET; 2) prospectively assess the impact of contextual risk and protective
factors on health and psychosocial outcomes over time (at baseline/pre-palate surgery, 24 months, and 36
months of age); and 3) qualitatively evaluate caregiver perceptions of health and psychosocial outcomes and
treatment experiences over time through narrative interviews with 40 caregivers. Data from this study will
elucidate early predictors of poor and optimal outcome trajectories and inform both the type and timing of
interventions to ensure that all children born with CP±L achieve optimal health and well-being.
Status | Active |
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Effective start/end date | 08/1/21 → 07/31/24 |
Funding
- National Institute of Dental and Craniofacial Research: $775,361.00
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