Enhancing the accuracy of register-based metrics: Comparing methods for handling overlapping psychiatric register entries in Finnish healthcare registers.

OBJECTIVES: Healthcare registers are invaluable resources for research. Partly overlapping register entries and preliminary diagnoses may introduce bias. We compare various methods to address this issue and provide fully reproducible open-source R scripts. METHODS: We used all Finnish healthcare registers 1969-2020, including inpatient, outpatient and primary care. Four distinct models were formulated based on previous reports to identify actual admissions, discharges, and discharge diagnoses. We calculated the annual number of treatment events and patients, and the median length of hospital stay (LOS). We compared these metrics to non-processed data. Additionally, we analyzed the lifetime number of individuals with registered mental disorders. RESULTS: Overall, 2,130,468 individuals had a registered medical contact related to mental disorders. After processing, the annual number of inpatient episodes decreased by 5.85%-10.87% and LOS increased by up to 3 days (27.27%) in years 2011-2020. The number of individuals with lifetime diagnoses reduced by more than 1 percent point (pp) in two categories: schizophrenia spectrum (3.69-3.81pp) and organic mental disorders (1.2-1.27pp). CONCLUSIONS: The methods employed in pre-processing register data significantly impact the number of inpatient episodes and LOS. Regarding lifetime incidence of mental disorders, schizophrenia spectrum disorders require a particular focus on data pre-processing.

Design and Development of a Web-Based Prospective Nationwide Registry for Ocular Inflammatory Diseases: UVEITE.PT - The Portuguese Ocular Inflammation Registry.

Uveitis is a heterogeneous collection of infrequent diseases, which poses significant challenges to cost-effective research in the field. Medical registries are being increasingly recognized as crucial tools to provide high-quality data, thus enabling prospective clinical research. This paper describes the design and technical structure development of an innovative countrywide electronic medical record for uveitis, Uveite.pt, and gives an overview of the cohort registered since its foundation, March 2020.Uveite.pt is an electronic medical record platform developed by the Portuguese Ocular Inflammation Group (POIG), a scientific committee of the Portuguese Ophthalmology Society. This is a nationwide customized web-based platform for uveitis patients useful for both clinical practice and real-world-based research, working as a central repository and reporting tool for uveitis. This paper describes the technical principles, the design and the development of a web-based interoperable registry for uveitis in Portugal and provides an overview of more than 400 patients registered in the first 18 months since inception.In infrequent diseases, the existence of registries enables to gather evidence and increase research possibilities to clinicians. The adoption of this platform enables standardization and improvement of clinical practice in uveitis. It is useful to apprehend the repercussion of medical and surgical treatments in uveitis and scleritis, supporting clinicians in the strict monitoring of drug adverse reactions and surgical outcomes.

Health care utilization among individuals who die by suicide as compared to the general population: a population-based register study in Sweden.

BACKGROUND: Globally, 700 000 people die every year by suicide. Health care consultation patterns the period before suicide could be one potential way to identify people at risk for suicide. Therefore, this study examines health care patterns up to one year prior to the suicide by age, sex and prior diagnoses and specifically investigates if and how this differs from the general population of Skåne, Sweden. METHODS: This cohort study includes all individuals, aged 15 and older, that died by suicide in Region Skåne, Sweden from 2004 to 2015 (n = 1653). The individuals were identified through the Cause of death register and then linked to the Skåne healthcare register. Health care data was analyzed as proportions consulting different types of health care the month and year preceding the suicide, we also investigated the impact of age, sex and the occurrence of prior psychiatric and pain diagnoses. Additionally, we compared the proportion of consulting care among the suicide victims and the general population of Skåne. RESULTS: In the month before their death, 53% of the suicide victims had any health care consultation, compared with 20% in the general population of Skåne, a given month (p < 0.0001). The corresponding figures for the year prior to suicide was 86% among those who died by suicide, compared to 69% in the general population of Skåne, a given year (p < 0.0001). Women, and those having a documented history of psychiatric diagnosis were more likely to have health care consultations in the month and year preceding suicide (p < 0.001), compared to men and suicide victims without a history of psychiatric disease. Older adults that died by suicide, were less likely to consult psychiatric care compared to the younger suicide victims (p < 0.001). CONCLUSION: A majority of the suicide victims consulted health care in the near time before death and the proportion of seeking health care was significantly higher than in the general population of Skåne and higher among female suicide victims as compared to males. Alternative preventive screening measures should be considered for individuals consulting health care, especially for older people and individuals outside the psychiatric care.

The effects of a daycare reform on health in childhood - Evidence from Sweden.

This paper studies the impact of a daycare reform on children's mental and physical health development in Sweden. The reform effectively reduced daycare fees by a significant amount and went along with an expansion of supply. We draw on a unique set of comprehensive individual-level healthcare register data over the period 1999-2008. By exploiting variation in reform exposure by birth cohort, we estimate short and medium-run effects on child health at different ages. We find a significant reduction in mental disorders in the medium-run for children affected by the reform. The reform leads to strong and immediate increases in probabilities of diagnosis with physical health conditions that fade out as children get older. Sub-sample analyses indicate that the reform effects are strongly associated with children from disadvantaged backgrounds. An analysis of healthcare utilization shows that affected children have more overall medical visits at younger ages but fewer sickness-related visits in primary school than non-affected children.

Parental questionnaires provided reliable data on childhood asthma compared with national registers.

BACKGROUND: Much of our knowledge of childhood asthma comes from questionnaire-based studies. Our main aim was to assess the agreement between parental-reported data at 12 years of age and data from two national Swedish registers. METHODS: Data were obtained from the prospective, longitudinal, population-based Children of Western Sweden cohort, which focused on children born in 2003. The parents answered questionnaires at six months and one, four, eight and 12 years of age. Personal identity numbers linked 3634 children to the Swedish Prescribed Drug Register (SPDR) and the National Patient Register (NPR). RESULTS: At 12 years of age, there was substantial overall agreement between the asthma medication reported by the parents in the questionnaire and the SPDR for any asthma medication (94.8%, kappa 0.71) and maintenance treatment (95.3%, kappa 0.68). In contrast, the agreement between the outpatient asthma diagnoses in the NPR and the questionnaire-based asthma was 30.5% and it was 32.8% between the NPR and the dispensed asthma medication in the SPDR. Hospitalization was rare for obstructive diseases after early childhood, and 38.2% of the 12-year-old children only received a short-acting beta agonist, with no maintenance treatment. CONCLUSION: There was good agreement between the questionnaire-based data on asthma medication and the national drug register, but the National Patient Register provided incomplete information on asthma diagnoses, probably because it did not include primary care diagnoses. The results show that well-constructed parental questionnaires can provide reliable data on childhood asthma.