There is an increasing number of literature on the patients perspective respectively on patient reported outcomes in Haemophilia. But there are very few publications on patient education in this area. Does anyone know specific patient education tools / self-management education programs for adult patients with haemophilia?
I think the best way for education of chronic patients who can meet each other off and on , is patient to patient education .
see the following links
I hope this helps
Ariel
http://www.biomedcentral.com/1472-6947/13/113
https://clinicaltrials.gov/ct2/show/NCT01477437
http://www.ncbi.nlm.nih.gov/pubmed/24456316
Article Training the client in self-management of hemophilia
Dear colleage:I recommend you to consult: :
1-Transition Guidelines for People with Bleeding Disorders.Date:
November 9, 2003
2-GUIDELINES FOR THE MANAGEMENT OF HEMOPHILIA 2nd edition Prepared by the Treatment Guidelines Working Group, on behalf of the World Federation of Hemophilia (WFH) .These guidelines were originally published by Blackwell Publishing in Haemophilia; Epub 6 JUL 2012. DOI: 10.1111/j.1365-2516.2012.02909.x. They are reprinted with their permission. © Blackwell Publishing Ltd., 2012.
I hope this helps you.
My best regards.
The Australian Haemophilia Centres Directors Organisation (AHCDO) is currently developing Australian Haemophilia Guidelines based on the WFH guidelines.
The National Blood Authority in Australia has also developed 'MyABDR'. MyABDR is a secure app for smartphones and a computer website for people with bleeding disorders or parents/caregivers. Patients/caregivers can use MyABDR to record home treatments and bleeds and manage treatment product stock. There is also a MyABDR paper-based Treatment Diary as an alternative. The MyABDR app and web site link directly to the Australian Bleeding Disorders Registry (ABDR). The ABDR is the system used by Haemophilia Centres around Australia for the clinical care of their patients.
The MyABDR project, like the Australian Bleeding Disorders Registry (ABDR), is funded by all Australian governments as part of the national arrangements for meeting the cost of blood and blood products and treatments for people with bleeding disorders. The National Blood Authority (NBA) develops and maintains the Australian Bleeding Disorders Registry (ABDR) system for Haemophilia Centres.
More information, a video, links to the app and other materials such as a brochure and FAQ's are available on the NBA's website here:
http://www.blood.gov.au/myabdr
Hope this helps!
Kind Regards,
Leia.
Dear all, thank you for your helpful informations and links. Best, Michael
there is a lot of information as well in the world hemophilia site (www.wfh.org) & www.ehc.eu