Prevalence of diabetes mellitus at the end of life: An investigation using individually linked cause-of-death and medical register data

Aims: Although diabetes mellitus at the end of life is associated with complex care, its end-of-life prevalence is uncertain. Our aim is to estimate diabetes prevalence in the end-of-life population, to evaluate which medical register has the largest added value to cause-of-death data in detecting diabetes cases, and to assess the extent to which reporting of diabetes as a cause of death is associated with disease severity. Methods: Our study population consisted of deaths in the Netherlands (2015–2016) included in Nivel Primary Care Database (Nivel-PCD; N = 18,162). The proportion of deaths with diabetes (Type 1 or 2) within the last two years of life was calculated using individually linked cause-of-death, general practice, medication, and hospital discharge data. Severity status of diabetes was defined with dispensed medicines. Results: According to all data sources combined, 28.7% of the study population had diabetes at the end of life. The estimated end-of-life prevalence of diabetes was 7.7% using multiple cause-of-death data only. Addition of general practice data increased this estimate the most (19.7%-points). Of the cases added by primary care data, 76.3% had a severe or intermediate status. Conclusions: More than one fourth of the Dutch end-of-life population has diabetes. Cause-of-death data are insufficient to monitor this prevalence, even of severe cases of diabetes, but could be enriched particularly with general practice data.