A Nationwide Survey of Oral Health Related Quality of Life of Children With Orofacial Cleft in New Zealand.

OBJECTIVES: To describe (1) oral health related quality of life (OHRQoL) for children with orofacial cleft (OFC) in New Zealand and (2) assess any differences in OHRQoL by sex, ethnicity, and cleft phenotype using the 16 item (and 8 item subset) of the Child Perception Questionnaire (CPQ) and Parent version (P-CPQ). DESIGN AND SETTING: Prospective cross-sectional nationwide study. METHODS AND MATERIALS: Children with OFC and their parents completed the 16-item CPQ or the Parent CPQ, respectively, when attending cleft clinic appointments between January 2015 and December 2017. RESULTS: Overall, 174 children (mean age 10.4 ± 1.2 years) and their parents (n = 181) completed the CPQ or P-CPQ. In multivariable analysis, neither the CPQ nor P-CPQ 16-item or 8-item subset showed significant differences in OHRQoL total score with cleft phenotype. Children with cleft lip and palate (CLP) had higher (worse) well-being scores than those with cleft palate alone (CP) on the P-CPQ. Pacific Island children had consistently higher scores across both CPQ and P-CPQ, total and subscales. CONCLUSIONS: Significant differences in OHRQoL among children with OFC were found for the well-being domain for children with CLP as reported by P-CPQ, but the symptom domain and total score showed no differences. Poorer scores were reported for children of Pacific Island descent using both questionnaires. The study findings indicate that children with OFC in New Zealand are a group who experience worse OHRQoL when referenced to normative non-OFC data. Further investigations are required to establish greater insight into specific factors influencing OHRQoL.

Behavioral Outcomes in Children With an Orofacial Cleft in a National Study in New Zealand.

OBJECTIVE: To determine whether children with an orofacial cleft have higher levels of behavioral problems than the general population and whether this differs by cleft phenotype. DESIGN: A cohort of children with cleft lip and/or palate (CL/P) born in New Zealand from January 1, 2000. SETTING: Cleft clinics in New Zealand participating in a larger outcomes study between 2014 and 2017. PARTICIPANTS: Children (N = 378) aged 5 to 12 years of age and their parents. MAIN OUTCOMES: The Strengths and Difficulties Questionnaire (SDQ) and Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales 4.0 and Family Impact Module 2.0. RESULTS: Compared to standardized norms, children with a cleft had higher than expected (defined as 20%) levels of abnormal/borderline SDQ scores for conduct problems (27.4%, P = .0003) and peer relationship problems (31.6%, P < .0001) but lower than expected levels of problems with pro-social skills (6.3%, P < .0001). There were no significant differences by age-group and or cleft phenotype other than an increased risk of hyperactivity in children with CP compared to children with CL. Total difficulties SDQ scores had moderate correlations with the PedsQL. CONCLUSIONS: While over 90% of children with CL/P had normal prosocial skills, they may not be easily accepted by their peers which may result in behavioral problems. These concerns were moderately related to lower quality of life. Support for establishment and maintenance of peer relationships is important to address externalizing and peer difficulties in children with CL/P. Community knowledge and understanding of CL/P needs to continue to be promoted.

Quality of Life Using General Population Validated Questionnaires in Children With Cleft Lip and/or Palate in New Zealand.

OBJECTIVE: To determine the level of quality of life (QoL) in children with cleft lip and/or palate (CL/P) and whether this differs by cleft phenotype. DESIGN: A cohort of children with CL/P born in New Zealand. SETTING: A nationwide study of children born with CL/P and having primary surgery in New Zealand. PARTICIPANTS: Children with CL/P and their families (n = 397) who attended a cleft clinic between October 1, 2014, and September 30, 2017, and agreed to complete questionnaires on QoL. MAIN OUTCOMES: Primary outcomes were QoL from the PedsQL 4.0 core generic questionnaires and the PedsQL 2.0 Family impact scale. RESULTS: Children with CL/P in New Zealand generally have a high QoL as assessed by the PedsQL. The impact of cleft phenotype had limited effects on the child, however there were significant impacts on parents and families. We found that the family impact scale differed by cleft phenotype with those with CL having the highest QoL and those with cleft palate the lowest, and this was consistent across QoL subscales. Quality of life improved as a whole by age, particularly in physical and cognitive functioning, as well as in the ability to undertake family activities. CONCLUSIONS: Children with CL/P have generally good levels of QoL in New Zealand, however cleft phenotype impacts on the level, with the lowest levels in those with cleft palate. Psychological support of children with cleft and their families should be an integral part of cleft care.