Knowledge of disease and adherence in adult patients with haemophilia.
(2010) In Haemophilia 16. p.592-596- Abstract
- Summary. Patients with moderate and severe haemophilia are evaluated on a regular basis at their haemophilia centres but patients with mild haemophilia are seen less often because of fewer problems related to their disease. The needs of patients with milder forms of haemophilia, however, are often underestimated, both by the patient and staff at healthcare facilities. This study evaluated the knowledge of disease and adherence to treatment among patients with severe, moderate and mild haemophilia. This was a prospective multicentre study performed in Haemophilia Centres in Scandinavia. A total of 413 (67%) of 612 patients aged >25 years with mild, moderate and severe haemophilia completed a self-administered questionnaire. The mean age... (More)
- Summary. Patients with moderate and severe haemophilia are evaluated on a regular basis at their haemophilia centres but patients with mild haemophilia are seen less often because of fewer problems related to their disease. The needs of patients with milder forms of haemophilia, however, are often underestimated, both by the patient and staff at healthcare facilities. This study evaluated the knowledge of disease and adherence to treatment among patients with severe, moderate and mild haemophilia. This was a prospective multicentre study performed in Haemophilia Centres in Scandinavia. A total of 413 (67%) of 612 patients aged >25 years with mild, moderate and severe haemophilia completed a self-administered questionnaire. The mean age of the respondents was 49.7 years (range 25-87 years). Of the 413 respondents, 150 had a mild, 86 had a moderate and 177 had a severe form of haemophilia. A total of 22 (5%) patients did not know the severity of their disease, and 230 (56%) patients knew the effect of factor concentrate in the blood. Of the 413 respondents, 53 (13%) of the cohort never treated a haemorrhage. Patients with mild haemophilia, P </= 0.001, were the least likely to treat a haemorrhage. The relative number of patients who were afraid of virus transmission by factor concentrate was about similar in the three groups, 27% of those with severe haemophilia, 26% with moderate and 24% with mild haemophilia. This study shows that the amount of knowledge among haemophilia patients about their disease and treatment is somewhat limited, and demonstrates the importance of continually providing information about haemophilia and treatment, especially to patients with a mild form of the disease. (Less)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/1552900
- author
- Lindvall, Karin LU ; Colstrup, L ; Loogna, K ; Wollter, Im and Grönhaug, S
- organization
- publishing date
- 2010
- type
- Contribution to journal
- publication status
- published
- subject
- in
- Haemophilia
- volume
- 16
- pages
- 592 - 596
- publisher
- Wiley-Blackwell
- external identifiers
-
- wos:000279021800003
- pmid:20136657
- scopus:77954857223
- pmid:20136657
- ISSN
- 1351-8216
- DOI
- 10.1111/j.1365-2516.2009.02189.x
- language
- English
- LU publication?
- yes
- id
- 74b21e08-feba-4fa9-a9a1-801c2a1d4b2d (old id 1552900)
- alternative location
- http://www.ncbi.nlm.nih.gov/pubmed/20136657?dopt=Abstract
- date added to LUP
- 2016-04-04 08:56:41
- date last changed
- 2022-01-29 07:55:54
@article{74b21e08-feba-4fa9-a9a1-801c2a1d4b2d,
abstract = {{Summary. Patients with moderate and severe haemophilia are evaluated on a regular basis at their haemophilia centres but patients with mild haemophilia are seen less often because of fewer problems related to their disease. The needs of patients with milder forms of haemophilia, however, are often underestimated, both by the patient and staff at healthcare facilities. This study evaluated the knowledge of disease and adherence to treatment among patients with severe, moderate and mild haemophilia. This was a prospective multicentre study performed in Haemophilia Centres in Scandinavia. A total of 413 (67%) of 612 patients aged >25 years with mild, moderate and severe haemophilia completed a self-administered questionnaire. The mean age of the respondents was 49.7 years (range 25-87 years). Of the 413 respondents, 150 had a mild, 86 had a moderate and 177 had a severe form of haemophilia. A total of 22 (5%) patients did not know the severity of their disease, and 230 (56%) patients knew the effect of factor concentrate in the blood. Of the 413 respondents, 53 (13%) of the cohort never treated a haemorrhage. Patients with mild haemophilia, P </= 0.001, were the least likely to treat a haemorrhage. The relative number of patients who were afraid of virus transmission by factor concentrate was about similar in the three groups, 27% of those with severe haemophilia, 26% with moderate and 24% with mild haemophilia. This study shows that the amount of knowledge among haemophilia patients about their disease and treatment is somewhat limited, and demonstrates the importance of continually providing information about haemophilia and treatment, especially to patients with a mild form of the disease.}},
author = {{Lindvall, Karin and Colstrup, L and Loogna, K and Wollter, Im and Grönhaug, S}},
issn = {{1351-8216}},
language = {{eng}},
pages = {{592--596}},
publisher = {{Wiley-Blackwell}},
series = {{Haemophilia}},
title = {{Knowledge of disease and adherence in adult patients with haemophilia.}},
url = {{http://dx.doi.org/10.1111/j.1365-2516.2009.02189.x}},
doi = {{10.1111/j.1365-2516.2009.02189.x}},
volume = {{16}},
year = {{2010}},
}