Diagnoses among long-term care recipients in Norway: a nation-wide registry study on prevalence and data completeness

The Norwegian Registry for Primary Health Care (NRPHC) is a mandatory register for all publicly funded primary healthcare services in Norway, including long-term care (LTC) services. The registry holds information on diagnoses for recipients of LTC services, but little is known regarding data quality and completeness.

The study population consisted of all LTC recipients in Norway in 2023 (N=393,446). We investigated the proportion registered with any diagnosis in NRPHC LTC data. We compared diagnoses reported by LTC providers with diagnoses reported by general practitioners and by specialist health services. Additionally, we investigated the distribution of diagnoses by type of LTC provided. Diagnoses presumed common among recipients of LTC were investigated (diabetes, cardiovascular diseases, chronic obstructive lung diseases, cancer, mental disorders/substance use disorders, dementia, intellectual disability and hip fracture).

Diagnoses were reported by LTC providers for 51.4% of LTC recipients. Diagnoses were more often reported for users with more complex services (long-term institutional stay: 85.5%; assistive technology: 30.5%). Including data from general practitioners and specialist health services increased prevalence estimates compared with using NRPHC LTC data alone (dementia: 14.2% vs 8.2%; chronic obstructive lung diseases: 12.7% vs. 4.1%). Based on all available data, the prevalence of reported dementia among recipients of long-term institutional stay was 58.7%. The prevalence of reported substance use disorders among recipients of home-based services was 13.4%.

Data on diagnoses reported by LTC providers to the NRPHC are insufficient and should be supplemented with data from other sources.