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Using stroke registers for research: Example from RIKS stroke in Sweden

Using stroke registers for research: Example from RIKS stroke in Sweden. Registration of patients and feed-back data. Registration of patients at local hospital via the Internet. Riks-Stroke national database. Simple statstical analysis of local hospital data online.

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Using stroke registers for research: Example from RIKS stroke in Sweden

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  1. Using stroke registers for research: Example from RIKS stroke in Sweden

  2. Registration of patients and feed-back data Registration of patients at local hospital via the Internet Riks-Stroke national database Simple statstical analysis of local hospital data online More extensive reports of data from Riks-Stroke once a year

  3. Number of patients included in Riks-Stroke 25000 25000 20000 20000 15000 15000 193 700 events 10000 10000 5000 5000 0 0 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 Data from2003/BS

  4. Secondary prevention after stroke All patients (%) treated with Aspirin, antiplatelet agents, or oral anticoagulants

  5. Patients treated in a stroke unit,

  6. Patients examined with CT-scan % 100 <75 years 95 ≥ 75 years 90 85 80 2003 1995 1996 1997 1998 1999 2000 2001 2002

  7. Patients treated in a stroke unit (SU) 100% Treated in a general ward 76% 80% 60% 40% Treated in a stroke unit 20% 0% 2000 2001 2002 2003 1998 1995 1996 1997 1999 1994

  8. 100 90 80 70 60 50 40 30 20 10 0 216 435 429 224 229 411 424 430 434 417 432 233 210 453 461 436 464 219 457 443 215 459 218 438 222 141 147 110 455 414 242 416 427 428 231 440 118 221 223 235 456 439 213 449 447 421 423 116 418 446 143 441 437 475 230 412 419 460 433 426 115 420 473 145 413 236 225 452 146 445 450 273 232 212 451 227 234 228 431 454 422 484 415 211 Patients still living at home 3 months after stroke without help from the community % Age standardized and only people living independently at home before the stroke event

  9. Patients that often or always feel depressed 3 months after stroke 13.2% % 0 5 10 15 20 Jämtland Stockholm Uppsala Östergötland Örebro V. Götaland Gävleborg Kalmar Södermanland Västmanland Halland Gotland Kronoberg Dalarna Västernorrland Skåne Blekinge Norrbotten Värmland Västerbotten Jönköping 15 % 0 5 10 20

  10. % 0 5 10 15 20 25 30 Stockholm Gotland Jämtland Västmanland Patients declaring their health as bad or very bad 3 months after the stroke event Blekinge Uppsala Gävleborg Östergötland Örebro Södermanland Kalmar Västerbotten Norrbotten Kronoberg Västernorrland Värmland Halland V. Götaland Skåne Jönköping 20,3% Dalarna % 0 5 10 15 20 25 30

  11. Stroke units vs. general wards – functional outcome at 3 months Age standardised data and only patients fully conscious at admission are included p<0,0001 p<0,0001 % 80 p<0,0001 60 40 Stroke units General wards 20 0 Independent mobility Living independently at home Independent in primary ADL

  12. GW SU 3-months case fatality(only patients independent and fully conscious at onset) % 15 All ages 10 5 0 1995 1996 1997 1998 1999 2000 2001

  13. How could we use data from a register? • Adherence to national clinical guidelines • Equity of healthcare delivery (age, sex, health care providers, geographical location, etc)

  14. How could we use data from a register? • Adherence to national clinical guidelines • Equity of healthcare delivery (age, sex, health care providers, geographical location, etc) • ‘Service epidemiology’ (are interventions working in routine care, satisfaction with stroke services)?

  15. How could we use data from a register? • Adherence to national clinical guidelines • Equity of healthcare delivery (age, sex, health care providers, geographical location, etc) • ‘Service epidemiology’ (are interventions working in routine care, satisfaction with stroke services) • Simple epidemiology (socioeconomic factors, quality of life, depression, pain, fatigue)?

  16. How could we use data from a register? • Adherence to national clinical guidelines • Equity of healthcare delivery (age, sex, health care providers, geographical location, etc) • ‘Service epidemiology’ (are interventions working in routine care, satisfaction with stroke services) • Simple epidemiology (socioeconomic factors, quality of life, depression, pain, fatigue) • Register for recruiting to trials?

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