REVIEW OF 103 SWEDISH HEALTHCARE QUALITY REGISTERS

Monday, 18 August 2014
Exhibit hall (Dena'ina Center)
Louise Emilsson, PhD , Primary care research unit, Värmlands Nysäter, Sweden
Bertil Lindahl, PhD , Department of Medical Sciences,Uppsala Clinical Research Center, Uppsala, Sweden
Max Koster, PhD , National Board of Health and Welfare, Stockholm, Sweden
Mats Lambe, PhD , Karolinska Institutet, Stockholm, Sweden
Jonas F Ludvigsson, PhD , Karolinska Institutet, Stockholm, Sweden
INTRODUCTION:  

In the past two decades an increasing number of nationwide, mostly physicianinitiated,

Healthcare Quality Registries (QRs) focusing on specific disorders have been

developed. This article describes the purpose, organisation, variables, coverage,

completeness, and quality of 103 Swedish QRs.

METHODS:  

In March-September 2013, we examined the 2012 applications of 103 QRs to the

Swedish Association of Local Authorities and Regions (SALAR), as well as studying

annual reports from the same QRs. After an initial data abstraction, the coordinator of

each QR was contacted at least twice in June-October 2013 and asked to confirm the

veracity of the data retrieved from the applications and reports.

RESULTS:  

About 60% of the QRs covered ≥80% of their target population (completeness). Data recorded in Swedish

QRs include aspects of management (means of diagnosis, clinical characteristics of

the disease, treatment, and lead times). In addition, some QRs retrieve data on selfreported

quality of life (EQ5D, SF-36, and disease-specific measures), lifestyle

(smoking) and general health status (WHO performance status, body mass index, and

blood pressure).

CONCLUSIONS:  

In conclusion, most Swedish QRs have a high completeness. The detailed clinical data

available in the QRs complement information from government-administered registries

and provide an important source not only for assessment and development of quality of

care but also for research studies.