Lives of Irish Adolescents Who Were Born With a Cleft (LIA-Cleft)

Objective
The objective was to describe the lives of adolescents, who were born with cleft lip and palate (CL/P), in comparison to the general population as recorded in Growing up in Ireland (GUI), the national longitudinal study of children and youth.

Design
This was a cross-sectional study.

Setting: The study was performed in a cleft center at a university teaching hospital.

Participants: Adolescents born with CL/P in the years 2007 to 2009.
Interventions: Growing up in Ireland questionnaires, which assessed demographics, health and experience of friendship, school, leisure, and social life, were adapted and administered to adolescents and their parents/guardians, who were identified from a prospectively maintained cleft database. Data were compared to that of GUI Cohort ‘08.

Main Outcome Measures: Outcome measures comprised primary caregiver and young person self-report items. Mental health and psychological well-being were assessed using validated instruments including the Strengths and Difficulties Questionnaire.

Results
Thirty adolescents (10 female, 20 male) participated in the LIA-Cleft group. LIA-Cleft respondents indicated poorer ratings of both medical and dental health than the GUI group. Responses to questions regarding friendship, bullying, physical activity, social media, and screen time were similar in the GUI and LIA-Cleft groups. The LIA-Cleft group were less satisfied with their lives and exhibited lower self-esteem than the GUI group, but did not differ in measures of mental health and well-being or socioemotional well-being.

Conclusions
In spite of reporting poorer medical and dental health, young people who were born with CL/P in Ireland lead lives that are broadly similar to their peers in the general population.