‘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

Abstract

Hepatocyte nuclear factor-1 α (HNF-1 α) 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 α 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 α 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.

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