Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child

Feragen, Kristin Billaud; Semb, Gunvor; Heliövaara, Arja; Lohmander, Anette; Johannessen, Emma Christine; Boysen, Betty Marie; Havstam, Christina; Lundeborg, Inger; Nyberg, Jill; Pedersen, Nina-Helen; Bogh-Nielsen, Joan; Eyres, Philip; Bradbury, Eileen; Rumsey, Nichola

doi:10.6084/m9.figshare.4668505.v1

iphs_a_1254642_sm4894.pdf (15.49 MB)

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child

journal contribution

posted on 2017-02-20, 13:38 authored by Kristin Billaud Feragen, Gunvor Semb, Arja Heliövaara, Anette Lohmander, Emma Christine Johannessen, Betty Marie Boysen, Christina Havstam, Inger Lundeborg, Jill Nyberg, Nina-Helen Pedersen, Joan Bogh-Nielsen, Philip Eyres, Eileen Bradbury, Nichola Rumsey

Background and aim: Few studies have explored children’s emotional and behavioural reactions to cleft surgery and treatment-related stress. The objective was to investigate parents’ evaluations of appearance and treatment outcomes in their 5-year-old child with unilateral cleft lip and palate (UCLP), and their perceptions of how their child was coping with treatment, comparing this information with recorded postsurgical complications.

Design: Three parallel group randomised clinical trials were undertaken as an international multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK.

Methods: Three different surgical procedures for primary palatal repair were tested against a common procedure in the total cohort of 448 children born with a non-syndromic UCLP. A total of 356 parents completed the Scandcleft Parent Questionnaire, and 346 parents completed the Cleft Evaluation Profile.

Results: The results indicated that the majority of parents were satisfied with cleft-related features of their child’s appearance. Further, most children coped well with treatment according to their parents. Nevertheless, 17.5% of the children showed minor or short-term reactions after treatment experiences, and 2% had major or lasting difficulties. There were no significant relationships between parent perceptions of treatment-related problems and the occurrence of post-surgical medical complications.

Conclusions: Most parents reported satisfaction with their child’s appearance. However, treatment-related problems were described in some children, urging cleft centres to be aware of potential negative emotional and behavioural reactions to treatment in some young children, with a view to preventing the development of more severe treatment-related anxiety.

Trial registration: ISRCTN29932826.