The evolution and utility of a national stroke registry: the Swedish experience
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1 The evolution and utility of a national stroke registry: the experience Thomas Linden MD, PhD National Stroke Research Institute, Melbourne Gothenburg University, Sweden
2 More info stroke.org Mail address Department of Medicine Norrland University Hospital SE Umeå,, Sweden Phone Tel No +46 (0) Fax. No. +46 (0) Cerebrovasc Dis 2003;15(suppl 1):5-7
3 RIKS-STROKE STROKE The registry for quality assessment of stroke care from 1994 onwards funded publicly all 79 hospitals admitting acute stroke patients all ages questionnaire follow-up at 3 months after stroke (a 12- month follow-up is underway)
4 AIMS OF RIKS-STROKE STROKE The registry for quality assessment of stroke care Primary: to improve quality of stroke care in all hospitals (and after discharge from hospital) processes (adherence to evidence-based national guidelines on stroke care) outcome, including patient-oriented variables Secondary: Research
5 WHAT STRATEGY? COMPRE- HENSIVE? = in-depth information SIMPLE? = good coverage
6 RIKS-STROKE: STROKE: MULTIDIMENSIONAL MONITORING OF STROKE CARE QUALITY Processes and outcome Entire stroke care chain IoM dimensions of quality
7 RIKS-STROKE STROKE TECHNICALITIES Paper protocols diskettes Internet-based registrations pilot studies for direct transfer of data from computerized medical records Hospitals have immediate access to own data, using a simple statistical and presentation package Annual feedback to individual hospitals (time trends, relative to other hospitals, etc.) Open-access website with comparisons between counties and hospitals
8 COVERAGE 87-93% in various validation studies Less likely to be covered: early deaths, not admitted to a stroke unit, elderly in nursing homes Follow-up data at 3 months: 89% of all included in the acute phase
9 4 YEARS TO INCLUDE ALL HOSPITALS Per cent of hospitals
10 5 YEARS TO ACHIEVE NEXT-TO TO-FULL COVERAGE: CUMULATED NO. OF EVENTS IN RIKS-STROKE STROKE Approx events per year
11 SIX DIMENSIONS IN QUALITY OF HEALTH CARE What is done in health care should be based on evidence/knowledge safe provided in time distributed fairly patient-orientated cost-effective (optimal use of resources) From: Institute of Medicine, Crossing the Quality Chasm: A New Health System for the Twenty-First Century (Washington: National Academy Press, 2001)
12 EVIDENCE-BASED? PROPORTION OF ACUTE STROKE PATIENTS TREATED IN A STROKE UNIT In stroke unit
13 Evidence-based? PROPORTION TREATED IN A STROKE UNIT BY HOSPITAL 2006 Stroke unit General ward Other
14 Västerbotten Halland Gävleborg Södermanland Skåne Stockholm Uppsala Kalmar Jönköping NATIONAL AVERAGE Örebro Dalarna Norrbotten Västa Götaland Gotland Västernorrland Jämtland Östergötland Västmanland Värmland Kronoberg Blekinge Evidence-based? THROMBOLYSIS FOR ACUTE ISCHEMIC STROKE BY REGION: Proportion treated %
15 Safe? ADHERENCE TO NATIONAL GUIDELINES: PROPORTION OF PATIENTS WITH ISCHEMIC STROKE TREATED WITH HEPARIN per cent
16 SAFE? SEVERE COMPLICATIONS IN CAROTID SURGERY Stroke or death <30 days, % data from the Swedvasc quality register
17 In time? DELAY FROM ONSET TO ARRIVAL IN HOSPITAL Hours, median
18 Distributed fairly? SEX DIFFERENCES After age adjustment, no differences in admission to a stroke unit thrombolysis anticoagulation after embolic stroke other antithrombotic secondary prevention antihypertensives More men than women treated with statins after stroke
19 Patient-oriented? DISSATISFIED WITH ACUTE CARE BY COUNTY Halland Blekinge Skaraborg Dalarna Kronoberg Bohuslän Västerbotten Norrbotten Västernorrland Älvsborg Örebro Malmö Jönköping Östergötland Kristianstad Göteborg Västmanland Gotland Malmöhus Stockholm (N) Stockholm (NE) Värmland Uppsala Kalmar Jämtland Gävleborg Södermanland Stockholm (SW) Stockholm (S) Stockholm (NW) Proportion dissatisfied, %
20 Patient-oriented? UNMET NEEDS OF COMMUNITY SUPPORT AFTER DISCHARGE Malmö Kristianstad fd. Värmland Kronoberg Skaraborg Jönköping Älvsborg Blekinge Malmöhus Västmanland Stockholm N Halland Södermanland. Stockholm NE Bohuslän Dalarna Uppsala Örebro Jämtland Gävleborg Västernorrland Östergötland Västerbotten Kalmar Stockholm SW Göteborg fd. Norrbotten Stockholm S Gotland Stockholm NW Proportion claiming unmet needs, %
21 Cost-effective? OPTIMAL USE OF RESOURCES Preliminary analyses only. Pilot cost estimates based on 6,824 patients in Riks- Stroke. Initial hospitalisation 6,920 (range ,478) Later direct costs 54,950 Indirect costs (premature death, 14,810 early retirement) Total costs 76,680
22 KEY QUALITY INDICATORS ON OUTCOME Survival Primary ADL functions at 3 months Institutionalisation at 3 months Support from family members and social services Low mood Smoking cessation Self-assessed general health Quality of life (EQ-5)
23 OPPORTUNITIES TO EXPAND THE USE OF RIKS-STROKE STROKE DATA Linkage to other registers by personal identification numbers: cause-of-death hospital admissions (partly also out-patient care) prescribed drugs socioeconomic demography/geneology
24 EXAMPLE OF LINKAGE TO NATIONAL REGISTER ON PRESCRIBED DRUGS: PROPORTION RETAINED ON SECONDARY PREVENTION n=11,077
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