What gets recorded, counts: dementia recording in primary care compared with a specialist database

Background: databases of electronic health records are powerful tools for dementia research, but data can be influenced by incomplete recording. We examined whether people with dementia recorded in a specialist database (from a mental health and dementia care service) differ from those recorded in primary care.

Methods: a retrospective cohort study of the population covered by Lambeth DataNet (primary care electronic records) between 2007 and 2019. Documentation of dementia diagnosis in primary care coded data and linked records in a specialist database (Clinical Records Interactive Search) were compared.

Results: 3,859 people had dementia documented in primary care codes and 4,266 in the specialist database, with 2,886/5,239 (55%) documented in both sources. Overall, 55% were labelled as having Alzheimer's dementia and 29% were prescribed dementia medication, but these proportions were significantly higher in those documented in both sources. The cohort identified from the specialist database were less likely to live in a care home (prevalence ratio 0.73, 95% confidence interval 0.63-0.85), have multimorbidity (0.87, 0.77-0.98) or consult frequently (0.91, 0.88-0.95) than those identified through primary care codes, although mortality did not differ (0.98, 0.91-1.06).

Discussion: there is under-recording of dementia diagnoses in both primary care and specialist databases. This has implications for clinical care and for generalizability of research. Our results suggest that using a mental health database may under-represent those patients who have more frailty, reflecting differential referral to mental health services, and demonstrating how the patient pathways are an important consideration when undertaking database studies.