2 April 2016

National Quality Registry for Heart Failure (RiksSvikt)

  • Registry Manager: Östergötland County Council
  • Registry Centre - affiliation: Uppsala Clinical Research Center (UCR)
  • Start year: 2003
  • Classifications used: Does not use any classification
  • This registry contains data on: Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

Heart failure is the leading cause of hospitalisation among people over age 65. It can be difficult to diagnose heart failure and more than 50 percent of the patients do not meet the accepted diagnosis criteria.

Both under- and over-diagnosis are common (Dahlström et al OBS-HF studien, Eur. J Heart Failure 2009). Modern treatments with Renin-angiotensin blockade, beta receptor blockers and aldosterone blockers have brought benefits in terms of improved quality of life, reduced mortality and reduced need for hospitalisation. Despite the positive results, only slightly more than 50 percent of patients receive the recommended treatment and of these, the majority does not receive sufficient daily doses of the recommended medications.

In the area of heart failure, there is good evidence for how patients should be treated based on data from large, well-controlled studies. There are also regularly updated guidelines in place for diagnosis and treatment on both the national and European levels.

According to a SIFO study, 78 percent of patients with heart failure do not know what the disease entails. Most patients have poor knowledge about their medications and about their condition, which means that they cannot recognise the signs of deterioration and contact their doctor in time, resulting in an increased frequency of readmissions. Studies have shown that better care and treatment can prevent 50 percent of all hospitalisations.

There is a need to improve both diagnosis and treatment through a stricter adherence to national guidelines. Large, well-controlled studies have demonstrated the benefits (reduced mortality and morbidity and improved quality of life) of treating selected patients with special pacemakers (so-called CRT, with or without ICD (automatic defibrillator)). This is a method that is being increasingly used, particularly among patients for whom medical treatment has not provided the desired effect.

A national heart failure registry visualises for participating regional centres how to follow the guidelines and how each centre stands in comparison to the national average. The purpose of RiksSvikt is to improve the administration of patients with chronic heart failure by providing participating hospitals/medical centres, through RiksSvikt, with on-line reporting of input data on the care provider’s patients. Information is provided in comparison with national and county averages.

The registry also gives the clinics knowledge on how to follow national guidelines. It is also possible to see changes over time (trend analyses) within each clinic online. Feedback is provided to each clinic annually on mortality, morbidity, diagnosis, medical treatment, functional capacity and quality of life among patients with heart failure, and on how this data stands in comparison to the national average.

The registry contains information on underlying diseases, diagnoses, treatment, quality of life (EQ5D), functional capacity (NYHA classification), laboratory values, blood pressure, heart rate and planned follow-up.

Population

All patients diagnosed with heart failure are to be registered in RiksSvikt, and patients with heart failure are to be registered at least once a year during office visits to the hospital or primary care clinic. Patients with heart failure should also be registered if the condition worsened during hospitalisation.

Ages in the registry

Persons over age 18.

Total volume of registry

Number of unique patients: 49,634. Total number of clinic admissions: 75,725.

Volume over the past operating year

Number of unique patients in 2011: 7,344. Total number of clinic admissions in 2011: 12,524.

Coverage rate

66 percent in 2011.

References on validations

Monitoring began in spring 2012 and has continued regularly since this time.

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

Category: Circulatory system

Certification level: 3

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