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Cees Smit

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  • It has already been twenty years since the first Van Creveldsymposium. During this time-line the results of the HiN study have been presented to you. The HiN study probably is familiair to you all as many of you have contributed to this project. Today i have the privilege to share with you the results of this study.
  • The hemophilia in the Netherlands project was started in 1972 by dr Veltkamp in the Academic Hospital in Leiden. It started as a studentproject of 3 medical students. The start of this study coincided with the founding of the Netherlands hemophilia society. The vice-president of the NVHP cooperated in this project. Together they reaced about 500 patients, primarily patients with severe hemophilia. Van links naar rechts: Wiesje Willemeur, Hans Vn Dijck, Ben van der Putten, Gideon Schrijver
  • This relatively small study grew into a national project which has already been repeated for 5 times. Since 1972 3994 questionnaires have been sent and 2961 patients participated. The HiN questionnares have covered an extensive number of topics, in 2001 there were 192 questions to be answered. The hin study has lead to 50 publications in national and international journals and 5 patient reports have informed patients on the results.
  • The number of participants has doubled since 1972.
  • In de loop van de jaren is er heel wat veranderd voor hemofiliepatienten, ook behandelaren hebben een nieuwe kijk op behandeling ontwikkeld. Dit zien we bijvoorbeeld terug in het gebruik van profylaxe. In deze dia wordt de jongste groep van 0-16 vergeleken met de groep ouder dan 25 jaar. We zien dat in beide groepen het gebruik is toegenomen,vooral in kinderen is dit explosief. In 2001 staat 86% van de kinderen onder de 16 op profylaxe, voor volwassen is dit slechts de helft. Hierbij is het wel van belang dat veel volwassenen on demand behandeling combineren met profylaxe op risico volle dagen.
  • Wanneer we kijken naar ziekenhuisopnames, deze dia laat dit voor alle patienten zien zien we dat patienten minder worden opgenomen, maar de 18% is nog steeds meer dan 3 keer zo hoog als voor de nederlandse mannelijke populatie. Betreft alle patienten.
  • wanneer we dan kijken naar het aantal dagen dat patienten in het ziekenhuis verblijven zien we dat dit voor ernstige hemofiliepatienten iets hoger is dan voor matige hemofilie maar het is ongeveer gelijk aan wat we in de populatie zien.
  • Het jaarlijks aantal bloedingen, hier weergegeven met de mediaan is sinds 1972 afgenomen. Hierbij worden ook twee leeftijdsgroepen weergegeven. We zien dat kinderen minder bloedingen hebben dan volwassenen. Hier is natuurlijk ook de groep van profylaxe het grootst.
  • The Hin project offered the opportunity to cooperate with many other researchers in the field of hemophilia. In 1985 Inge Varekamp studied genetic counselling and its implications. Special attention was paid to HIV and social functioning. Thesis by Frits Rosendaal In 1992 Triemstra et al performed the HiN-4 and looked at well being. The mortality of mothers of hemophilia patients was studied by sramek et al. In 2001 the HiN-5 proved to be succesful again, together with dr Peters, Mauser, Heijnen, de Goede, Cees smit, Jose Willemse we formed a study group which worked hard to create an extensive questionnaire. The choices involved in the the use of recombinant products were studied by Jeanette Zwart from Utrecht and quality of life by Dirk Posthouwer who finished his thesis led by Evelien Mauser. Together with her, the patients society and the department of clinical genetics of the LUMC and UMCU we looked into bleeding problems in carriers of hemophilia.
  • When can these hemorrhages occur, Like in hemophilia patients you can think of “spontaneous bleeding” so not related to medical interventions, but also of bleeding related to medical interventions. A specific moment of possible bleeding is delivery.
  • Het HiN onderzoek is een vragenlijst onderzoek waarvan u hier de voorbeelden ziet. Deze vragenlijsten worden verzonden aan zoveel mogelijk mensen met hemofilie
  • We would like to thank all participants .

Cees Smit Cees Smit Presentation Transcript

  • An overview of 40 years H emophilia i n the N etherlands Iris Plug, Frits Rosendaal & Cees Smit Department of Clinical Epidemiology Leiden University Medical Center BBMRI, Paris, December 15, 2009
  •  
  • The history of Hemophilia in the Netherlands
    • 1972 student project in Leiden
    • Hemophilia in The Netherlands: results of a survey on the medical,genetic and social situation of Dutch hemophiliacs. Acta Medica Scandinavica, 1974
    Leids Dagblad 1972 Dr J. Veltkamp
  • Questionnaires
    • 3994 questionnaires sent
    • 2981 patients participated
    • In 2001 192 questions to be answered
    • Over 50 publications
      • 5 patient reports
    Hemofilie in Nederland-5 2001 Landelijk onderzoek onder mensen met hemofilie
  • Participants 1972 1978 1985 1992 2001 447 560 935 980 1066
  • Changes in treatment (severe hemophilia)
  • Hospital admissions
  • Number of days in hospital
  • Annual number of hemorrhages (severe hemophilia)
  • Life expectancy
  •  
  •  
  • Time line 1985 1992 2001 Genetic counselling HIV Well being Mortality in mothers of hemophilia patients Social functioning Hepatitis C Bleeding problems in carriers mortality mortality The use of recombinant products 2005 mortality
  • Female relatives of men with hemophilia
  • Possible risk moments during life
      • Bleeding independent of clinical interventions
        • Bruising, nose-bleeding
      • Bleeding after medical interventions
        • Tooth extractions, surgery, tonsillectomy
      • Bleeding related to delivery
        • During pregnancy, postpartum
        • * with informed consent, linkage of data of patients with carriers in their families and with medical data about their carrier status
  • Bloedingsproblemen bij draagsters van hemofilie A of B Een HiN-5 deelstudie Onderzoek onder vrouwen die getest zijn op draagsterschap van hemofilie A of B Methods
  • Clinical implications
    • Female relatives of men with hemophilia need to be informed:
      • Possibility of being a carrier
        • 47% not aware of possibility of being a carrier *
        • 25% not familiar with the possibility of testing
      • Possibility of bleeding problems and the importance of knowing your factor VIII or IX activity
        • In 50% of carriers in our study factor VIII of IX unknown
    * Data from studentproject Marijke den Uyl, AMC, 2004
  • Expectations for the future: HiN-6 in 2010/2011
    • Stronger link between mail survey and patient data hospitals
    • A gradual development to a biobank
    • Cooperation between hospitals is a need, it gradually becomes better
    • Financing is a problem
    • (Preventiefonds-> ZonMw, not innovative enough)
    • Financing haemophilia society + LUMC
    • Possibility of a European grant (ageing)
  • Acknowledgements University Medical Center Utrecht Van Creveldclinic dr E.P. Mauser-Bunschoten Department of Medical Genetics dr J.K. Ploos van Amstel Leiden University Medical Center Department of Clinical Epidemiology prof. dr F.R. Rosendaal dr J.G. van der Bom dr,. Iris Plug Department of Clinical Genetics dr A.H.J.T. Vriends dr J.E.M. van Diemen-Homan dr M. Losekoot Department of Clinical Epidemiology prof. dr F.R. Rosendaal dr J.G. van der Bom Dutch Hemophilia Society (NVHP) drs J. Willemse dr. Cees Smit Financial support Haemophilia Foundation