'I don't feel like a diabetic any more': the impact of stopping insulin in patients with maturity onset diabetes of the young following genetic testing

Hepatocyte nuclear factor-1 alpha (HNF-1 alpha) maturity onset diabetes of the young (MODY) is the commonest cause of monogenic diabetes but is frequently misdiagnosed as type 1 diabetes. The availability of genetic testing in MODY has improved diagnosis. Sulphonylurea sensitivity in HNF-1 alpha patients means that those on insulin from diagnosis can transfer to sulphonylureas and may improve glycaemic control. To gain insight into the implications for patients of stopping insulin, in-depth interviews were conducted with eight HNF-1 alpha patients transferred to sulphonylureas after a median of 20 years on insulin. Thematic content analysis highlighted four key themes: fear, anxiety and excitement regarding stopping insulin, particularly among those who had been on insulin for many years or had never omitted insulin in the past improved lifestyle and self image accompanied by feelings of relief and 'increased normality' reflections on their time on insulin, including feelings of annoyance, particularly when the need for insulin treatment had been questioned at diagnosis difficulty 'letting go' of insulin treatment some patients found it hard to believe that they no longer required injections as this conflicted with messages previously received from healthcare professionals. Transferring from insulin to sulphonylureas had a positive impact on lifestyle but support was needed for patients to adjust, many having grown up with the belief they would be on insulin for life.