Caregiver satisfaction survey results in a multidisciplinary cleft clinic

Abstract

**Introduction**: Orofacial clefts have a wide range of severity and can create functional and aesthetic issues for the affected individuals as well as influence their social interactions and general happiness. The aim of this research was to investigate how parents/caregivers score functional and aesthetic aspects of their child’s cleft and their child’s social interactions and happiness. **Method**: Parents/caregivers attending the Christchurch Cleft Clinic in New Zealand between 2016 and 2019 were asked to complete a survey covering eight items—hearing, look of face, look of teeth, speech, teeth issues, food or liquid coming out of the nose, social interactions, general happiness and a free-text comment section. Items were scored using a visual analogue scale. Descriptive statistics were performed on the data and qualitative analysis of the free-text comments was conducted via thematic categorisation. The study was deemed an out-of-scope audit from the New Zealand Health and Disability Ethics Committee; locality approval was granted by the Canterbury District Health Board (RO# 19069) and consent was obtained from all participants. **Results**: A total of 226 completed surveys from 154 parents were assessed. Surveys that had any incomplete question (24) and/or had repeat submissions (72) were excluded, reducing the sample to 130 surveys. ‘Speech’, ‘look of the teeth’ and ‘teeth issues’ had the lowest (worst) mean scores. Negative functional issues relating to speech and fistulas were the most common free-text themes. **Conclusion**: Speech was a common concern for parents, emphasising the importance of speech language therapy as a key component in cleft treatment. Parental concerns regarding the look of their child’s teeth and teeth issues highlight the need for an interdisciplinary treatment approach. The inclusion of otolaryngology and psychology services to improve issues that arise from hearing, social and emotional challenges is also recommended.