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Josep Garre-Olmo,1–3 Anna Ponjoan,1,4–5 José Maria Inoriza,6,7 Jordi Blanch,4 Inma Sánchez-Pérez,6 Rafel Cubí,4 Rosa de Eugenio,7 Oriol Turró-Garriga,1,2 Joan Vilalta-Franch On behalf of the Registry of Dementia of Girona Study Group (ReDeGi Study Group)11Research Group on Ageing, Disability and Health, Girona Biomedical Research Institute (IDIBGI), Catalonia, Spain; 2Registry of Dementia of Girona, Health Assistance Institute, Catalonia, Spain; 3Department of Medical Sciences, School of Medicine, University of Girona, Catalonia, Spain; 4Vascular Health Research Group (ISV-Girona), Foundation University Institute for Primary Health Care Research Jordi Gol I Gurina, Catalonia, Spain; 5Autonomous University of Barcelona, Catalonia, Spain; 6Research Group on Health Services and Health Outcomes (GRESSIRES), Integrated Health Services Baix Empordà (SSIBE), Catalonia, Spain; 7Hospital de Palamós, Integrated Health Services Baix Empordà (SSIBE), Catalonia, SpainBackground: Knowledge on survival after diagnosis is important for all stakeholders. We aimed to estimate the survival and life expectancy after a dementia diagnosis, and to quantify the impact of dementia subtypes on mortality.Methods: Retrospective matched cohort study using a linkage between a dementia-specific registry and two primary care electronic medical records databases. Between 1 January 2007 and 31 December 2015 there were 5,156 subjects aged 60 years and over registered by the Registry of Dementia of Girona and matched to 15,468 age-sex and comorbidity individuals without dementia attended by general practitioners in the province of Girona (Catalonia, Spain).Results: The median survival was 5.2 years (95% CI 5.0 to 5.4), the median life expectancy was 74.7 years (95% CI 71.9 to 76.5), and there were differences by gender. The mortality rate was 127.1 per 1,000 person-years (95% CI 121.6 to 132.7), and the hazard ratio for mortality in persons with dementia ranged between 1.63 (95% CI 1.52 to 1.76) for Alzheimer’s disease and 2.52 (95% CI 1.90 to 3.35) for Parkinson-plus syndromes. There was one death per year attributable to dementia for every 18.6 persons with dementia, and for every 2.4 persons with dementia who die, one death was attributable to dementia.Conclusion: The prognosis after dementia diagnosis is conditioned by demographic and clinical features. Although survival is larger for women, they also experience a higher number of years of life lost. Parkinson-plus syndromes and dementia due to multiple etiologies are among the most malignant subtypes regarding mortality.Keywords: epidemiology, diagnosis, dementia, mortality

Anna Ponjoan,1–3 Josep Garre-Olmo,3 Jordi Blanch,1 Ester Fages,1,4 Lia Alves-Cabratosa,1 Ruth Martí-Lluch,1–3 Marc Comas-Cufí,1 Dídac Parramon,1,4 María García-Gil,1 Rafel Ramos1,51Vascular Health Research Group (ISV-Girona), Jordi Gol Institute for Primary Care Research (IDIAPJGol), Barcelona, Catalonia, Spain; 2Universitat Autònoma de Barcelona, Bellaterra, Catalonia, Spain; 3Girona Biomedical Research Institute (IDIBGI), Girona, Catalonia, Spain; 4Primary Care Services, Catalan Health Institute (ICS), Girona, Catalonia, Spain; 5Department of Medical Sciences, School of Medicine, Campus Salut, University of Girona, Girona, Catalonia, SpainBackground: Electronic health records (EHR) from primary care are emerging in Alzheimer’s disease (AD) research, but their accuracy is a concern. We aimed to validate AD diagnoses from primary care using additional information provided by general practitioners (GPs), and a register of dementias.Patients and methods: This retrospective observational study obtained data from the System for the Development of Research in Primary Care (SIDIAP). Three algorithms combined International Statistical Classification of Diseases (ICD-10) and Anatomical Therapeutic Chemical codes to identify AD cases in SIDIAP. GPs evaluated dementia diagnoses by means of an online survey. We linked data from the Register of Dementias of Girona and from SIDIAP. We estimated the positive predictive value (PPV) and sensitivity and provided results stratified by age, sex and severity.Results: Using survey data from the GPs, PPV of AD diagnosis was 89.8% (95% CI: 84.7–94.9). Using the dataset linkage, PPV was 74.8 (95% CI: 73.1–76.4) for algorithm A1 (AD diagnoses), and 72.3 (95% CI: 70.7–73.9) for algorithm A3 (diagnosed or treated patients without previous conditions); sensitivity was 71.4 (95% CI: 69.6–73.0) and 83.3 (95% CI: 81.8–84.6) for algorithms A1 (AD diagnoses) and A3, respectively. Stratified results did not differ by age, but PPV and sensitivity estimates decreased amongst men and severe patients, respectively.Conclusions: PPV estimates differed depending on the gold standard. The development of algorithms integrating diagnoses and treatment of dementia improved the AD case ascertainment. PPV and sensitivity estimates were high and indicated that AD codes recorded in a large primary care database were sufficiently accurate for research purposes.Keywords: dementia, family physician, survey, algorithm, data accuracy, real-world data, validation, electronic medical records

Anna Ponjoan,1–3 Josep Garre-Olmo,2 Jordi Blanch,1 Ester Fages,1 Lia Alves-Cabratosa,1 Ruth Martí-Lluch,1–3 Marc Comas-Cufí,1 Dídac Parramon,1,4 María Garcia-Gil,1 Rafel Ramos1,5 1Vascular Health Research Group (ISV-Girona), Jordi Gol Institute for Primary Care Research (IDIAPJGol), Barcelona, Catalonia, Spain; 2Girona Biomedical Research Institute (IDIBGI), Girona, Catalonia, Spain; 3Santa Clara Primary Care Health Center, Catalan Health Institute, Girona, Catalonia, Spain; 4Autonomous University of Barcelona, Bellaterra (Cerdanyola del Vallès), Catalonia, Spain; 5Department of Medical Sciences, School of Medicine, Campus Salut, University of Girona, Girona, Catalonia, Spain Purpose: Updated estimates of incidence and prevalence of dementia are crucial to ensure adequate public health policy. However, most of the epidemiological studies in the population in Spain were conducted before 2010. This study assessed the validity of dementia diagnoses recorded in electronic health records contained in a large primary-care database to determine if they could be used for research purposes. Then, to update the epidemiology of dementia in Catalonia (Spain), we estimated crude and standardized prevalence and incidence rates of dementia in Catalonia in 2016. Methods: The System for the Development of Research in Primary Care (SIDIAP) database contains anonymized information for >80% of the Catalan population. Validity of dementia codes in SIDIAP was assessed in patients at least 40 years old by asking general practitioners for additional evidence to support the diagnosis. Crude and standardized incidence and prevalence (95% CI) in people aged ≥65 years were estimated assuming a Poisson distribution. Results: The positive predictive value of dementia diagnoses recorded in SIDIAP was estimated as 91.0% (95% CI 87.5%–94.5%). Age- and sex-standardized incidence and prevalence of dementia were 8.6/1,000 person-years (95% CI 8.0–9.3) and 5.1% (95% CI 4.5%–5.7%), respectively. Conclusion: SIDIAP contains valid dementia records. We observed incidence and prevalence estimations similar to recent face-to-face studies conducted in Spain and higher than studies using electronic health data from other European populations. Keywords: family physician, accuracy, quality, positive predictive value, electronic medical record, real-world data