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

• Published in: Diabetes research and clinical practice 2020-02, Vol.160, p.108003-108003, Article 108003
• Main Authors: Mitratza, Marianna, Kunst, Anton E., Harteloh, Peter P.M., Nielen, Markus M.J., Klijs, Bart
• Format: Article
• Language: English
• Subjects: Aged; Aged, 80 and over; Cause of death; Cause of Death - trends; Diabetes; Diabetes Mellitus - epidemiology; End-of-life prevalence; Female; Humans; Lifetime prevalence; Linkage; Male; Middle Aged; Prevalence; Primary Health Care; Registries; Terminal Care - methods
• ISSN: 0168-8227; 1872-8227
• DOI: 10.1016/j.diabres.2020.108003

•Almost 30 percent of those who died in The Netherlands had diabetes at the end of life.•Of all who died with diabetes, almost 80 percent used antidiabetic drugs.•Primary care data could best be used to detect cases not identified in cause-of-death registries. 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. 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. 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. 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.