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Recommendations for assessment, monitoring and follow-up of patients with haemophilia.

DE Moerloose, P; Fischerström, K; Lambert, T; Windyga, J; Batorova, A; Lavigne-Lissalde, G; Rocino, A; Astermark, Jan LU and Hermans, C (2011) In Haemophilia
Abstract
Summary. Over the last few decades, clinical follow-up of patients with haemophilia has become more complex as a result of the introduction of new treatment strategies, the presence of comorbidities related to haemophilia or ageing, as well as the emergence of new tools to evaluate the medical and social consequences of haemophilia. This publication describes the parameters and information that should be documented and the tests, examinations and interventions required for optimal follow-up of a patient with haemophilia. In the absence of formal studies, the present recommendations have been established as result of a series of consensus meetings in the frame of the European Haemophilia Therapy Standardization Board (EHTSB). The following... (More)
Summary. Over the last few decades, clinical follow-up of patients with haemophilia has become more complex as a result of the introduction of new treatment strategies, the presence of comorbidities related to haemophilia or ageing, as well as the emergence of new tools to evaluate the medical and social consequences of haemophilia. This publication describes the parameters and information that should be documented and the tests, examinations and interventions required for optimal follow-up of a patient with haemophilia. In the absence of formal studies, the present recommendations have been established as result of a series of consensus meetings in the frame of the European Haemophilia Therapy Standardization Board (EHTSB). The following 11 domains were identified: Baseline information, Current status, Treatment, Inhibitor status, Bleeding, Joint status and pain, Comorbidities, Dental care, Physical activities, Social participation and Quality of life. For each domain, details are proposed for the relevant parameters to be captured and monitored as well as the relevant tools that facilitate data collection. Adopting these recommendations should help the individual care of patients and, even though this is not the primary objective of this article, it should also help at national and international level to shape a new approach to haemophilia by working towards a more standardized outcome assessment. Greater standardization should have implications for data collection, improvements in treatment evaluation and optimizing resources. (Less)
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author
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Contribution to journal
publication status
published
subject
in
Haemophilia
publisher
Federation of European Neuroscience Societies and Blackwell Publishing Ltd
external identifiers
  • pmid:21992772
  • scopus:84860323900
ISSN
1351-8216
DOI
10.1111/j.1365-2516.2011.02671.x
language
English
LU publication?
yes
id
67fadd83-ac87-4338-bb06-5cdc240406ad (old id 2200555)
alternative location
http://www.ncbi.nlm.nih.gov/pubmed/21992772?dopt=Abstract
date added to LUP
2011-11-02 09:57:37
date last changed
2017-11-05 04:41:50
@article{67fadd83-ac87-4338-bb06-5cdc240406ad,
  abstract     = {Summary. Over the last few decades, clinical follow-up of patients with haemophilia has become more complex as a result of the introduction of new treatment strategies, the presence of comorbidities related to haemophilia or ageing, as well as the emergence of new tools to evaluate the medical and social consequences of haemophilia. This publication describes the parameters and information that should be documented and the tests, examinations and interventions required for optimal follow-up of a patient with haemophilia. In the absence of formal studies, the present recommendations have been established as result of a series of consensus meetings in the frame of the European Haemophilia Therapy Standardization Board (EHTSB). The following 11 domains were identified: Baseline information, Current status, Treatment, Inhibitor status, Bleeding, Joint status and pain, Comorbidities, Dental care, Physical activities, Social participation and Quality of life. For each domain, details are proposed for the relevant parameters to be captured and monitored as well as the relevant tools that facilitate data collection. Adopting these recommendations should help the individual care of patients and, even though this is not the primary objective of this article, it should also help at national and international level to shape a new approach to haemophilia by working towards a more standardized outcome assessment. Greater standardization should have implications for data collection, improvements in treatment evaluation and optimizing resources.},
  author       = {DE Moerloose, P and Fischerström, K and Lambert, T and Windyga, J and Batorova, A and Lavigne-Lissalde, G and Rocino, A and Astermark, Jan and Hermans, C},
  issn         = {1351-8216},
  language     = {eng},
  month        = {10},
  publisher    = {Federation of European Neuroscience Societies and Blackwell Publishing Ltd},
  series       = {Haemophilia},
  title        = {Recommendations for assessment, monitoring and follow-up of patients with haemophilia.},
  url          = {http://dx.doi.org/10.1111/j.1365-2516.2011.02671.x},
  year         = {2011},
}