National Quality Registry for Eating Disorders (RIKSÄT)

• Registry Manager: Stockholm County Council
• Registry Centre - affiliation: Registry Centre VGR
• Start year: 1999
• Classifications used: ICD9, DSM-IV
• This registry contains data on: Diagnoses, Interventions, Inpatient Care, Specialised Outpatient Care, PROM or other patient-reported health effects, Socio-economics, Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

Eating disorders are common, serious, and a growing health problem among teenagers and young adults. It is estimated that 75,000-100,000 teenage girls and young women in Sweden suffer from eating disorders. The disorder is also observed among boys and men, and younger and older women. The costs of eating disorders are great, in terms of both personal suffering and health economics. Mortality is high, surpassed by only a few other psychiatric conditions.

Clinical guidelines and consensus emphasise the importance of increasing our knowledge of progression, outcome, prognosis and treatment of the disorders. There is little experience in psychiatry of systematic monitoring and quality development. Continued work with RIKSÄT is very important for both the long-term development of treatment for eating disorders in the country, and to provide pioneering work for quality registration in psychiatry – this latter with reference to the future inclusion of structured assessment support in the registry.

The registry aims to:

• describe the patients treated for eating disorders
• document the patients’ path through the healthcare system, including waiting times
• document the type and extent of treatment initiatives
• document the outcome of treatment and treatment interruptions, and relate these to patient and treatment characteristics
• describe the patient-perceived treatment effects and relate these to the “objective” effects
• describe the patients’ perception of treatment received, and relate these to treatment characteristics and outcome
• longitudinally follow Swedish treatment for eating disorders with regard to changes in, for example, treatment incidence, “case mix”, type and extent of treatment initiatives, costs, treatment outcome and satisfaction.

Population

For inclusion, both of the following criteria must be met: diagnosed eating disorder and intention of treatment (for the eating disorder) by the treatment facility in question. The long-term aim is to include all levels of care, but RIKSÄT is currently a treatment registry and it is unclear which levels of care in different county councils offer treatment for eating disorders. The population of existing cases in the populace is estimated at about 100,000 persons. Many people, however, do not seek or do not receive care, and the number of persons who can be included is therefore probably less.

Ages in the registry

All ages. Existing patients are between the ages of about 7-70.

Total volume of registry

The number of initially registered treatments in October 2012 was 16,608.

Volume over the past operating year

In 2011, new registrations totalled 2339. In 2012, this is expected to increase by more than 10 percent.

Coverage rate

The number of patients registered with eating disorder specialist clinics is about 90 percent. The number of clinics who have responsibility for treating eating disorders is unknown because we do not know how many actually carry out treatment.

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