Life quality and experience among long-term survivors of brittle type 1 diabetes mellitus

Severely unstable, or 'brittle', type 1 diabetes is characterised by recurrent admissions, usually in diabetic ketoacidosis and life disruption. It is associated with excess mortality and increased risk of diabetic complications. The long-term social and life effects of survivors have not, however, been previously explored. The aim of our study was to determine the long-term effects of a period of brittle control on life quality and psychosocial morbidity. We identified 10 survivors of an original cohort of 33 brittle type 1 patients, recruited between 1979 and 1985. All were visited by a diabetes research nurse, and a semi-quantitative interview was conducted, and quantitative quality of life (QOL) assessment made. QOL data were compared with a case-control group (two controls per case) matched for age, sex and diabetes duration; but without a history of brittle control. All of the 10 survivors were female; mean age was 42±4 years and diabetes duration 32±5 years. The mean period of follow up was 22 years. Four (40%) had active psychiatric disease (two depression, one depression and schizophrenia, and one eating disorder). Most attributed their previous instability to life stresses and/or inadequate diabetes-related education. Two (20%) admitted to inducing dysglycaemia by therapeutic interference. Five were in a stable relationship and three had children. None of the survivors was actively brittle, and most attributed resolution of brittleness to positive life changes. Total QOL score was lower (i.e. worse) in the brittle compared with the stable group (p=0.046). We conclude that survivors of brittle type 1 diabetes have significant psychosocial morbidity and reduced life quality. This emphasises the adverse long-term effects of brittle diabetes, even when glycaemic stability has been restored.