Transforming lives: transferring patients with neonatal diabetes from insulin to sulphonylureas

Abstract

AbstractBackground: Mutations in the KCNJ11 gene encoding Kir6.2 are the most common cause of neonatal diabetes. Although clinically ‘insulin dependent’ these patients may respond to oral sulphonylureas. Families’ experiences of coping with the condition and the impact of transferring from long-term insulin to sulphonylureas have not been explored.Aim: This study aims to increase understanding of having a child with neonatal diabetes caused by a mutation in the KCNJ11 gene.Method: In-depth interviews were conducted with parents of 11 UK patients with KCNJ11 gene mutations during 2004–2005. The patients had a median age of 13 years (range 0.5–57 years). Qualitative methodology was used to gain an in-depth understanding of the experiences from diagnosis of diabetes to present day. Interviews were audiotaped, transcribed and subjected to thematic content analysis.Results: Three key categories were identified: i) difficulties managing diabetes in a baby/young child – highlighting the constant care required an...