Kathleen A. Kapp-Simon, Meredith Albert, Todd C. Edwards, Salene M. Jones, Claudia Crilly Bellucci, Janine Rosenberg, Donald L. Patrick, Carrie L. Heike

Developmental Risk for Infants with Cleft Lip with or Without Cleft Palate Based on Caregiver-Proxy Reports

  • Otorhinolaryngology
  • Oral Surgery
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Objectives (1) Assess caregiver-reported development in infants born with cleft lip ± alveolus (CL ± A) and cleft lip and palate (CLP); (2) determine factors associated with increased developmental risk; and (3) determine consistency of developmental risk before and after surgery for cleft lip. Design Prospective, longitudinal assessment of development. Time (T) 1, prior to lip closure; T2, 2 months post lip closure. Setting Three US craniofacial teams and online parent support groups. Participants 123 total caregivers (96% mothers); 100 at T1, 92 at T2, and 69 at both T1 and T2. Measure Ages and Stages Questionnaire-3 (ASQ-3): Communication, Gross Motor, Fine Motor, Problem Solving, Personal Social Domains. Results At T1 47%; at T2 42% passed all 5 Domains; 36% of infants pass all 5 Domains at both T1 and T2. Infants with CLP were at greatest risk on Communication [ B = 1.449 (CI = .149-20.079), p = .038; Odds Ratio (OR) = 4.3 (CI = .923-19.650)] and Gross Motor Domains [ B = 1.753 (CI = .316-20.605), p = .034; OR = 5.8 (CI = 1.162-28.671)]. Male infants were at greatest risk on Fine Motor [ B = 1.542 (CI = .495-20.005), p = .009; OR = 4.7 (CI = 1.278-17.101)] and Problem Solving Domains [ B = 1.200 (CI = .118-19.708), p = .044; OR = 3.3 (CI = .896-12.285)]. Conclusions Based on caregiver report, infants with CL ± A and CLP meet referral criteria at a high rate. Infants with CLP and male infants were at greatest risk. Regular developmental screening is recommended.

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