Literature DB >> 24922288

Quality of haemophilia care in The Netherlands: new standards for optimal care.

Frank W G Leebeek1, Kathelijn Fischer2.   

Abstract

BACKGROUND: In the Netherlands, the first formal haemophilia comprehensive care centre was established in 1964, and Dutch haemophilia doctors have been organised since 1972. Although several steps were taken to centralise haemophilia care and maintain quality of care, treatment was still delivered in many hospitals, and formal criteria for haemophilia treatment centres as well as a national haemophilia registry were lacking.
MATERIAL AND METHODS: In collaboration with patients and other stakeholders, Dutch haemophilia doctors have undertaken a formal process to draft new quality standards for the haemophilia treatment centres. First a project group including doctors, nurses, patients and the institute for harmonisation of quality standards undertook a literature study on quality standards and performed explorative visits to several haemophilia treatment centres in the Netherlands. Afterwards concept standards were defined and validated in two treatment centres. Next, the concept standards were evaluated by haemophilia doctors, patients, health insurance representatives and regulators. Finally, the final version of the standards of care was approved by Central body of Experts on quality standards in clinical care and the Dutch Ministry of Health.
RESULTS: A team of expert auditors have been trained and, together with an independent auditor, will perform audits in haemophilia centres applying for formal certification. Concomitantly, a national registry for haemophilia and allied disorders is being set up. DISCUSSION: It is expected that these processes will lead to further concentration and improved quality of haemophilia care in the Netherlands.

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Year:  2014        PMID: 24922288      PMCID: PMC4044805          DOI: 10.2450/2014.0041-14s

Source DB:  PubMed          Journal:  Blood Transfus        ISSN: 1723-2007            Impact factor:   3.443


  8 in total

Review 1.  Establishing haemophilia care in developing countries: using data to overcome the barrier of pessimism.

Authors:  B L Evatt; L Robillard
Journal:  Haemophilia       Date:  2000-05       Impact factor: 4.287

2.  Prophylaxis of joint hemorrhages in hemophilia.

Authors:  S Van Creveld
Journal:  Acta Haematol       Date:  1969       Impact factor: 2.195

3.  The European Principles of Haemophilia Care: a pilot investigation of adherence to the principles in Europe.

Authors:  K Fischer; C Hermans
Journal:  Haemophilia       Date:  2012-08-29       Impact factor: 4.287

4.  A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders.

Authors:  Judith R Baker; Sally O Crudder; Brenda Riske; Val Bias; Ann Forsberg
Journal:  Am J Public Health       Date:  2005-09-29       Impact factor: 9.308

5.  Mortality among males with hemophilia: relations with source of medical care. The Hemophilia Surveillance System Project Investigators.

Authors:  J M Soucie; R Nuss; B Evatt; A Abdelhak; L Cowan; H Hill; M Kolakoski; N Wilber
Journal:  Blood       Date:  2000-07-15       Impact factor: 22.113

6.  Thirty years of hemophilia treatment in the Netherlands, 1972-2001.

Authors:  Iris Plug; Johanna G van der Bom; Marjolein Peters; Evelien P Mauser-Bunschoten; Arja de Goede-Bolder; Lily Heijnen; Cees Smit; Jeannette E F Zwart-van Rijkom; José Willemse; Frits R Rosendaal
Journal:  Blood       Date:  2004-08-12       Impact factor: 22.113

7.  European principles of haemophilia care.

Authors:  B T Colvin; J Astermark; K Fischer; A Gringeri; R Lassila; W Schramm; A Thomas; J Ingerslev
Journal:  Haemophilia       Date:  2008-01-30       Impact factor: 4.287

8.  Low-dose immune tolerance induction in hemophilia A patients with inhibitors.

Authors:  E P Mauser-Bunschoten; H K Nieuwenhuis; G Roosendaal; H M van den Berg
Journal:  Blood       Date:  1995-08-01       Impact factor: 22.113

  8 in total
  6 in total

1.  Haemophilia Centre Certification Systems: optional or optimal choice for healthcare systems?

Authors:  Gabriele Calizzani; Michael Makris; Pier Mannuccio Mannucci; Domenica Taruscio; Giuliano Grazzini; Fabrizio Oleari
Journal:  Blood Transfus       Date:  2014-04       Impact factor: 3.443

2.  The Italian institutional accreditation model for Haemophilia Centres.

Authors:  Gabriele Calizzani; Fabio Candura; Ivana Menichini; Romano Arcieri; Giancarlo Castaman; Alessandro Lamanna; Maria R Tamburrini; Antonio Fortino; Monica Lanzoni; Samantha Profili; Simonetta Pupella; Giancarlo M Liumbruno; Giuliano Grazzini
Journal:  Blood Transfus       Date:  2014-04       Impact factor: 3.443

3.  Health Status of Persons with Hemophilia: A Pilot Survey from a Resource-Constrained Country.

Authors:  Helen C Okoye; Benedict Nwogoh; Megan Adediran; Theresa U Nwagha
Journal:  Niger Med J       Date:  2019 Mar-Apr

4.  Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study.

Authors:  Erna C van Balen; Shermarke Hassan; Cees Smit; Mariette H E Driessens; Erik A M Beckers; Michiel Coppens; Jeroen C Eikenboom; Hélène L Hooimeijer; Frank W G Leebeek; Evelien P Mauser-Bunschoten; Lize F D van Vulpen; Saskia E M Schols; Frits R Rosendaal; Johanna G van der Bom; Samantha C Gouw
Journal:  Res Pract Thromb Haemost       Date:  2022-08-26

5.  SYMPHONY consortium: Orchestrating personalized treatment for patients with bleeding disorders.

Authors:  Marjon H Cnossen; Iris van Moort; Simone H Reitsma; Moniek P M de Maat; Roger E G Schutgens; Rolf T Urbanus; Hester F Lingsma; Ron A A Mathot; Samantha C Gouw; Karina Meijer; Annelien L Bredenoord; Rieke van der Graaf; Karin Fijnvandraat; Alexander B Meijer; Emile van den Akker; Ruben Bierings; Jeroen C J Eikenboom; Maartje van den Biggelaar; Masja de Haas; Jan Voorberg; Frank W G Leebeek
Journal:  J Thromb Haemost       Date:  2022-06-02       Impact factor: 16.036

6.  Mortality, life expectancy, and causes of death of persons with hemophilia in the Netherlands 2001-2018.

Authors:  Shermarke Hassan; Rory C Monahan; Evelien P Mauser-Bunschoten; Lize F D van Vulpen; Jeroen Eikenboom; Erik A M Beckers; Louise Hooimeijer; Paula F Ypma; Laurens Nieuwenhuizen; Michiel Coppens; Saskia E M Schols; Frank W G Leebeek; Cees Smit; Mariëtte H Driessens; Saskia le Cessie; Erna C van Balen; Frits R Rosendaal; Johanna G van der Bom; Samantha C Gouw
Journal:  J Thromb Haemost       Date:  2020-12-18       Impact factor: 5.824

  6 in total

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