National Quality Registry for HIV (InfCare HIV)

• Registry Manager: Stockholm County Council
• Registry Centre - affiliation: Registry Centre Stockholm, QRC
• Start year: 2003, became national registry in 2008
• Classifications used: ATC (pharmaceuticals)
• This registry contains data on: Pharmaceuticals, Diagnoses, Specialised Outpatient Care, PROM or other patient-reported health effects, Follow-up Data 3-5 months after the case is registered in the registry, Follow-up Data 6-11 months after the case is registered in the registry, Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

Background: HIV infection is lifelong and generates large amounts of data. The patients are treated at a large number of different clinics, usually with only a few patients at each clinic. Knowledge development is rapid with a changing disease panorama. This places demands on good decision-making support, quality assurance and consultation opportunities.

Purpose: To create good, equable care regardless of method of infection, gender and care provider by identifying problems and improvement potential. This is done through the integration of several functions: clinical decision support, health questionnaires with PROM, integrated database with process indicators and consultation modules where each clinic can monitor their development in real time.

Key processes and result indicators: Death: less than 1 percent of all patients per year. Patient-reported data with health-related quality of life (HRQoL): negative side effects: less than 25 percent. Well-being index: more than 50 percent. Adherence to treatment: less than 88 percent. Percentage treated with good virus control: more than 90 percent. Percentage immunodeficient where start of treatment is not initiated: less than 1 percent of all patients per year. Percentage treated with severe immunodeficiency: less than 10 percent. These indicators are used at all 30 HIV clinics and cover all known living patients (n=5996).

Coverage rate: more than 99 percent. In 2012, the number of patients increased by 6 percent.

Analysis/feedback: Each clinic can analyse its own data in real time. Once a year, data is collected from all clinics and compared with nationwide data and targets. The results are presented on the registry website; in newsletters to users; to the Swedish Society of Infectious Diseases; and at local, national and Nordic congresses arranged by specialist associations for infectious diseases, microbiology, gynaecology, venereology and infectious disease control organisations. For patients, voluntary organisations and the public via lectures.

Population

All HIV-infected patients receiving care in Sweden.

Ages in the registry

All ages.

Total volume of registry

All HIV-infected patients receiving care in Sweden.

Volume over the past operating year

6,016 patients.

Coverage rate

More than 99 percent.

References on validations

InfCare HIV has developed a data quality index for the analysis and correction of registry data at the individual, clinical and national levels. The database was externally validated by our research partner IBM Research Haifa (world leader in e-health), and results show that the percentage of inputting errors in our quality registry was 0 percent of 4 analysed parameters. This is, according to IBM, the only time they have ever experienced this.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.