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Aspects of haemophilia prophylaxis in Sweden.

https://arctichealth.org/en/permalink/ahliterature31604
Source
Haemophilia. 2002 Mar;8 Suppl 2:34-7
Publication Type
Article
Date
Mar-2002
Author
R C R Ljung
Author Affiliation
Department of Paediatrics, Lund University, University Hospital, Malmö, Sweden. Rolf.Ljung@pediatrik.mas.lu.se
Source
Haemophilia. 2002 Mar;8 Suppl 2:34-7
Date
Mar-2002
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Catheters, Indwelling - statistics & numerical data
Child
Drug Administration Schedule
Factor IX - administration & dosage
Factor VIII - administration & dosage
Hemarthrosis - prevention & control
Hemophilia A - prevention & control
Hemophilia B - prevention & control
Humans
Injections, Intravenous
Research Support, Non-U.S. Gov't
Sweden - epidemiology
Abstract
Prophylactic treatment of haemophilia has been gaining acceptance as the optimal therapeutic option in an increasing number of haemophilia centres in the developed world in recent years. This paper focus on three aspects of prophylactic therapy: when to start treatment, venous access and the dose/dose interval. Evidence is in favour of prophylactic treatment to be started at an early age using either a peripheral vein with 1-2 injections per week and a successive increase in the frequency depending on the child and the veins, or, using a Port-A-Cath which allows a better prophylactic coverage by infusions preferably every second day in haemophilia A and every third day in haemophilia B.
PubMed ID
11966851 View in PubMed
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Can long-term prophylaxis for severe haemophilia be stopped in adulthood? Results from Denmark and the Netherlands.

https://arctichealth.org/en/permalink/ahliterature29635
Source
Br J Haematol. 2005 Jul;130(1):107-12
Publication Type
Article
Date
Jul-2005
Author
K. van Dijk
K. Fischer
J G van der Bom
E. Scheibel
J. Ingerslev
H M van den Berg
Author Affiliation
Van Creveldkliniek, UMC Utrecht, The Netherlands. k_van_dijk@wanadoo.nl
Source
Br J Haematol. 2005 Jul;130(1):107-12
Date
Jul-2005
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Blood Coagulation Factors - administration & dosage
Child
Cohort Studies
Denmark
Hemophilia A - prevention & control
Hemophilia B - prevention & control
Hemorrhage - prevention & control
Humans
Joint Diseases - prevention & control
Netherlands
Patient Selection
Abstract
Prophylaxis is the treatment of choice for children with severe haemophilia. As prophylaxis is especially important during the period of growth, the need for continued prophylaxis in adulthood should be considered. The aim of this study was to describe the incidence and outcome of stopping prophylaxis in patients with severe haemophilia who were offered prophylaxis during childhood. All patients with severe haemophilia (factor VIII/IX
PubMed ID
15982352 View in PubMed
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[Cases of hemophilia in the Karolinska Hospital Pediatric Clinic]

https://arctichealth.org/en/permalink/ahliterature44572
Source
Lakartidningen. 1968 Mar 6;65(10):1033-6
Publication Type
Article
Date
Mar-6-1968

Effects of prophylactic treatment regimens in children with severe haemophilia: a comparison of different strategies.

https://arctichealth.org/en/permalink/ahliterature31603
Source
Haemophilia. 2002 Mar;8 Suppl 2:43-6
Publication Type
Article
Date
Mar-2002
Author
H M van den Berg
K. Fischer
J G van der Bom
G. Roosendaal
E P Mauser-Bunschoten
Author Affiliation
Van Creveldkliniek, Department of Paediatrics, Julius Centre for Patient Oriented Research, University Medical Centre, Utrecht, The Netherlands. h.m.vandeberg@digd.azu.nl
Source
Haemophilia. 2002 Mar;8 Suppl 2:43-6
Date
Mar-2002
Language
English
Publication Type
Article
Keywords
Adolescent
Child
Child, Preschool
Cohort Studies
Comparative Study
Factor IX - therapeutic use
Factor VIII - therapeutic use
Hemarthrosis - prevention & control
Hemophilia A - prevention & control
Hemophilia B - prevention & control
Humans
Infant
Netherlands
Sweden
Treatment Outcome
Abstract
Both Sweden and the Netherlands have a long experience with primary prophylaxis in children with severe haemophilia. In these countries it has been offered to all children for the last 3-4 decades. In Sweden prophylaxis is generally started at an earlier age with a higher dosage and frequency than in the Netherlands. Patients in the Netherlands receive a more individually tailored regimen, with prophylaxis now started after the first one or two joint bleeds and dosages are increased when breakthrough bleeds occur. The current study evaluated the effect prophylaxis on long-term outcomes and the consumption of clotting factor concentrates in Dutch and Swedish cohorts. Our results show that the orthopaedic outcome in the oldest groups of patients from Sweden and the Dutch cohorts were comparable, although the Swedish patients used twice as much clotting products per year. In the youngest patients, joint status is very good and further follow-up is necessary to demonstrate the benefits of either strategy. In conclusion, more individually tailored regimens aimed at preventing bleeding prevent joint damage in children with severe haemophilia, while clotting factor consumption is about half of that in previously described regimens.
PubMed ID
11966853 View in PubMed
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Implantable central venous catheter facilitates prophylactic treatment in children with haemophilia.

https://arctichealth.org/en/permalink/ahliterature36552
Source
Acta Paediatr. 1992 Nov;81(11):918-20
Publication Type
Article
Date
Nov-1992
Author
R. Ljung
P. Petrini
A K Lindgren
E. Berntorp
Author Affiliation
Department for Coagulation Disorders, Malmö General Hospital, Sweden.
Source
Acta Paediatr. 1992 Nov;81(11):918-20
Date
Nov-1992
Language
English
Publication Type
Article
Keywords
Catheterization, Central Venous - adverse effects - standards
Catheters, Indwelling - adverse effects - standards
Child
Child, Preschool
Factor VIII - administration & dosage - therapeutic use
Follow-Up Studies
Hemophilia A - prevention & control - surgery - therapy
Hospitals, General
Humans
Infant
Postoperative Complications - epidemiology - etiology
Sweden - epidemiology
Abstract
Twelve children with a severe form of haemophilia A received a totally implantable venous access system (Port-A-Cath) to facilitate regular prophylactic treatment with factor VIII. The indication for implantation was difficulty in obtaining regular access to a peripheral vein. Postoperative bleeding around the portal site occurred in two of 12 cases. After a median duration of follow-up of 26 months (range 5-79 months), none of the systems had needed replacement due to bleeding, septicaemia or thrombosis. One child, with an inhibitor against factor VIII, had an infection at the portal site and this system was removed. None of the other children had any serious side effects. Nine of the 12 children's parents learned how to use the Port-A-Cath system, thus enabling optimal prophylactic home treatment with factor VIII to be begun early in life.
PubMed ID
1467614 View in PubMed
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North American prophylaxis studies for persons with severe haemophilia: background, rationale and design.

https://arctichealth.org/en/permalink/ahliterature185720
Source
Haemophilia. 2003 May;9 Suppl 1:44-8; discussion 49
Publication Type
Article
Date
May-2003
Author
M J Manco-Johnson
V S Blanchette
Author Affiliation
The Mountain States Regional Hemophilia & Thrombosis Center, University of Colorado Health Sciences Center and The Children's Hospital, Denver, Colorado, USA. marilyn.manco-johnson@uchsc.edu
Source
Haemophilia. 2003 May;9 Suppl 1:44-8; discussion 49
Date
May-2003
Language
English
Publication Type
Article
Keywords
Acute Disease
Canada
Clinical Trials as Topic
Cohort Studies
Hemarthrosis - etiology - prevention & control
Hemophilia A - prevention & control
Humans
United States
Abstract
Arthropathy is associated with the greatest cost and morbidity to persons with haemophilia. Clinical protocols have been developed empirically to prevent or retard the development of joint disease using routine infusions of replacement factor concentrate. However, randomized clinical trials to determine optimal therapy to prevent joint disease in persons with severe haemophilia are lacking. Two clinical trials are ongoing to answer important clinical questions about the prevention of arthropathy. The first, a US randomized clinical trial, is comparing an aggressive multiple-infusion episode-based protocol to standard alternate-day prophylaxis to determine whether prevention of joint disease requires prevention of the bleeding event, per se, or can be achieved by promoting complete resolution of each bleeding event in the joint. This study included the development and validation of sensitive new physical and imaging scales to detect the earliest signs of joint disease in young children. The second, a single-arm, open-label Canadian study, is asking whether prevention of joint disease in young children can be individualized by escalating the dose and frequency of routine replacement infusions of factor concentrate based upon the clinical course of haemophilia in the affected child. Both of these studies will contribute valuable information regarding optimal therapy and will help establish evidence-based medicine for the management of severe haemophilia.
PubMed ID
12709037 View in PubMed
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Partnerships in specialty care: exploring rural haemophilia provider resource needs.

https://arctichealth.org/en/permalink/ahliterature167108
Source
Aust J Rural Health. 2006 Oct;14(5):184-9
Publication Type
Article
Date
Oct-2006
Author
Andrea M Pritchard
Marlene Reimer
Kari Simonson
Kathleen Oberle
Author Affiliation
Faculty of Nursing, University of Calgary, Calgary, Alberta, Canada. apritchard@mtroyal.ca
Source
Aust J Rural Health. 2006 Oct;14(5):184-9
Date
Oct-2006
Language
English
Publication Type
Article
Keywords
Canada
Community Networks - organization & administration
Focus Groups
Health Knowledge, Attitudes, Practice
Hemophilia A - prevention & control - therapy
Hospitals, Rural - organization & administration
Humans
Interdisciplinary Communication
Needs Assessment - organization & administration
Primary Health Care - organization & administration
Questionnaires
Rural health services - organization & administration
Abstract
The purpose of this study was to determine whether rural providers have adequate preparation for safe and effective haemophilia care.
This qualitative study proceeded in two phases: focus group (phase I) and telephone (phase II) interviews.
Five Canadian rural hospitals served by one urban haemophilia treatment centre and providing service to at least one haemophilia family.
Phase I: focus groups of rural health professionals (site 1: n = 5; site 2: n = 6), including nursing, medicine and lab technology. Phase II: telephone interviews with nine participants from nursing, medicine, lab technology, social work and physiotherapy across three sites.
Qualitative content analysis yielded categorical themes for specialty care resource requirements in a rural context.
Resource needs reflected five main categories: communication network, subjective knowledge, team roles, objective knowledge and partnerships (C-STOP).
The five C-STOP categories require resources and alignment of urban specialist, rural provider and family expertise. Specialty clinic efforts promoting self-care are incomplete without matched resources for rural providers.
PubMed ID
17032293 View in PubMed
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Prophylactic therapy for haemophilia: early experience.

https://arctichealth.org/en/permalink/ahliterature30986
Source
Haemophilia. 2003 May;9 Suppl 1:5-9; discussion 9
Publication Type
Article
Date
May-2003
Author
E. Berntorp
Author Affiliation
Department of Coagulation Disorders, Malmö University Hospital, Malmö, Sweden. erik.berntorp@medforsk.mas.lu.se
Source
Haemophilia. 2003 May;9 Suppl 1:5-9; discussion 9
Date
May-2003
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Child
Child, Preschool
Factor IX - therapeutic use
Factor VIII - therapeutic use
Female
Hemophilia A - prevention & control
Humans
Male
Abstract
During the 1960s, it was reported from Sweden that haemophiliacs with factor levels above 1% rarely develop arthropathy. This observation suggested that severe haemophilia could be converted to a milder form by regular infusions with factor concentrate. After several earlier publications, a report was published in 1992 that detailed 25 years' experience with prophylaxis in 60 patients from the Malmö centre. The results showed that starting prophylaxis early in life with a dose regimen that would prevent factor VIII or IX plasma levels from falling below 1% could prevent the development of haemophilic arthropathy. Also, older age groups who had received less intensive treatment, and who started prophylaxis later in life, were still in a much better condition than historic controls. In the 1970s several small but well-controlled studies from the USA, Germany and Italy clearly showed the benefit of prophylaxis in reducing bleeding frequency. Early experience from the Netherlands was published in 1971. Since these early studies, the results have been corroborated from many countries and in a large multinational study. Although the benefits of prophylaxis seem unquestionable, several research questions remain to be better elucidated, such as when to start and when to stop, dosing and dose interval, and how to assess the long-term treatment effects. These issues are of great economic importance, and the need for health economical studies is obvious.
PubMed ID
12709031 View in PubMed
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13 records – page 1 of 2.