Child Oral Health Impact Profile

2018

Cleft lip/palate (CLP), a chronic condition, is the second most common birth defect in the United States. Cleft care in early childhood includes a series of evaluations and a range of treatments delivered by a multidisciplinary team of health specialists to address functional (speech, hearing) and aesthetic (facial appearance) impacts of the condition. All children undergo an initial surgical repair in the first year of life and approximately half will undergo revision surgery between 2 and 5 years of age. The proposed study aims to systematically investigate demographic, contextual, and psychosocial factors in a prospective, multicenter, observational study in eight large, recognized cleft/craniofacial centers. Participants will include preschool-aged children with CLP or cleft palate only (CPO) and their CGs seeking cleft treatment from one of eight geographically and culturally diverse cleft teams. Our objective is to evaluate CG risk and protective factors and their perceptions of their childrens well-being (OHRQoL). This work will be accomplished through the following specific aims: 1. Develop/validate the COHIP-PS, to evaluate quality of life and family impact among preschool children with CLP. 2. Assess changes in family functioning and psychological well-being among CGs of preschool children with CLP. 3. Examine clinical status and team recommendations among children and their families having had traditional care and those having NAM and traditional care. 4. Assess quality of life changes and minimally important differences using the Global COHIP among preschool children who undergo secondary surgical revisions and preschool children (comparison group) who do not undergo secondary surgical revisions.

Cleft Lip/Palate, COHIP-PS, Psychosocial Factors

Performing Research or Evaluation

Health-Related Activities

Professionals and Para-Professionals, Children/Adolescents with Disabilities/SHCN

None

Not Applicable

N/A