Abstract
OBJECTIVE: To document the impact of early follow-up by specialized cleft nurses (SCNs) to families of infants with cleft lip and/or cleft palate (CL/P). DESIGN: Prospective inclusion of a control group, which received standard care alone, followed by an intervention group, which in addition received early SCN follow-up. SETTING: The cleft lip and palate team at a University hospital. PARTICIPANTS: 70 families (69 mothers and 57 fathers); control group (n = 38); intervention group (n = 32). INTERVENTION: SCNs offered a consultation at the maternity ward and follow-ups by phone or face-to-face at one, three, eight weeks and six months after birth. OUTCOME MEASURES: Use of Internet-Questionnaire, Quality of discharge teaching scale (QDTS), Post discharge coping difficulty scale (PDCDS), Response on follow-up by health professionals. RESULTS: Infants in the intervention group were admitted less frequently to a Neonatal Intensive Care unit (NICU); 21.9% vs 51.4%, P = .012. Parents in the intervention group used internet for cleft-related reasons less frequently (74.6% vs 85.9%), P = .112 and the mothers benefitted less from cleft-related activity on the internet (P = .013). The intervention group reported higher mean score for satisfaction with total cleft care (P = .001). There were no significant group differences regarding mean total score for discharge teaching (P = .315) and coping difficulties (P = .919). CONCLUSION: Early follow-up by a SCN with expertise in cleft care is highly valued by parents. Closer cooperation between the cleft team and health professionals at birth hospitals and Child health centers is necessary for optimal follow-up.