Validity of the Finnish Care Register for Social Welfare in a nationwide cohort of people with Alzheimer’s disease

TL;DR

This study evaluates the accuracy of a Finnish social welfare care register for tracking Alzheimer's patients in long-term care settings.

Contribution

The study provides a validation of the Care Register for Social Welfare in the context of Alzheimer’s disease care in Finland.

Findings

The Care Register for Social Welfare has high validity for tracking long-term care periods for Alzheimer’s patients.

Drug purchases during long-term care were recorded in 6–10% of cases, which may affect data accuracy.

Combining health and social care registers could improve the understanding of care utilization and costs.

Abstract

To assess the validity and completeness of the Care Register for Social Welfare among community-dwelling people with Alzheimer’s disease in Finland.

The study was carried out in the Medication Use and Alzheimer’s disease (MEDALZ) study population, which includes 70,719 people who received a clinically verified diagnosis of Alzheimer’s disease between 2005 and 2011 and the people matched with them for comparison (n=282,862). The data were linked to the Care Register for Social Welfare, which contains data on care periods for nursing homes and sheltered housing with 24-h assistance during the time period 1994–2015. The validity of the Care Register for Social Welfare was analysed in relation to the Prescription Register among people with Alzheimer’s disease aged >65 years (n=25,640) who fulfilled the definitions of long-term care in certain inpatient care units (nursing homes, institutional care for people with dementia and rehabilitation institutions), although, in Finland, drug purchases should not be recorded in the register during long-term care.

The required level of assistance at discharge was recorded for 99.7% of people, diagnoses for 5.1% of the care periods and the discharge date for 100% of the completed care periods. Depending on the definition of long-term care, 6–10% of all long-term care periods included drug purchases during the study period.

The validity of the Care Register for Social Welfare is high, but some limitations should be considered when using the data. Combining health and social care registers provides a potentially more comprehensive database on the utilisation and costs of services.

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