European principles of haemophilia care

Colvin, B. T.; Astermark, Jan; Fischer, Kathelijn; Gringeri, A.; Lassila, Riitta; Schramm, W.; Thomas, Angela; Ingerslev, J.

doi:10.1111/j.1365-2516.2007.01625.x

Cited by 175 publications

(212 citation statements)

References 43 publications

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“…In Europe, adherence to the 10 principles of hemophilia care and service provision level of HTCs have been audited by the European Haemophilia Therapy Standardisation Board (EHTSB) and patient organizations 15, 33, 34. Challenges to implementing a region‐wide benchmarking audit were apparent and these include country‐specific differences in organization of care and access to key services,15, 33 which may also be expected in Asia Pacific.…”

Section: Discussionmentioning

confidence: 99%

A survey of characteristics and current educational needs of hemophilia treatment centers within Asia Pacific

Lam

John

Street

2018

Research and Practice in Thrombosis and Haemostasis

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BackgroundPoor disease understanding and gaps in expertise regarding hemophilia care have been identified at all levels in Asia Pacific. Continued education for involved healthcare professionals (HCPs) is crucial for improved delivery.ObjectivesTo identify training and educational needs of hemophilia HCPs in Asia Pacific.MethodsClinicians working at hemophilia treatment centers (HTCs), identified from the World Federation of Hemophilia Directory, were contacted by the Asia Pacific Hemophilia Working Group (APHWG). An electronic survey was sent to 161 centers from 15 countries for which HTC identification was complete to assess HTC characteristics, educational status, and needs. Responses were stratified by national economic capacity.ResultsFrom March 23 to June 6, 2016, clinicians from 58 HTCs completed the survey. Most reported availability of specialists to serve core patient requirements, although availability of trained nurses and geneticists was low in lower‐middle income countries (LMICs). Although 98.3% of HTCs had laboratory facilities, 8.8% do not participate in any quality assessment schemes. The most common limitations of current initiatives were infrequency and lack of local language content. Education is currently mostly received via internet, particularly among LMICs and upper‐middle income countries (UMICs), though there is strong preference for meetings. Main barriers to receiving education were funding and time constraints. Unique priority topics were musculoskeletal management, quality of life and management by non‐hematologists (high‐income countries), inhibitor management and research (UMICs), and outcomes assessment (LMICs).ConclusionIn Asia Pacific, training programs should be tailored according to unique needs of differing economic capacities and resource settings.

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Section: Discussionmentioning

confidence: 99%

A survey of characteristics and current educational needs of hemophilia treatment centers within Asia Pacific

Lam

John

Street

2018

Research and Practice in Thrombosis and Haemostasis

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“…Several years have passed since EAHAD highlighted the importance of a national registry for haemophilia care for European countries [18]. Based on a survey performed in 2013, there are 27 national haemophilia registries in Europe [36]; we found publications from three of these.…”

Section: Current Haemophilia Registries and Their Characteristicsmentioning

confidence: 99%

“…More than 20 years later, the World Federation of Haemophilia (WFH) published guidelines for developing a national registry [17]. A few years after that, the European Association for Haemophilia and Allied Disorders (EAHAD) also recommended the establishment of national registries as one of the European principles of haemophilia care [18]. Useful information is freely available to provide guidance on the design and maintenance of a patient registry [19].…”

Section: Haemophilia Registriesmentioning

confidence: 99%

Registry‐based outcome assessment in haemophilia: a scoping study to explore the available evidence

Osooli

Berntorp

2016

J Intern Med

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Content List -Read more articles from the symposium: Future of haemophilia outcome assessment.Abstract. Osooli M, Berntorp E (Lund University and Sk ane University Hospital, Malm€ o, Sweden). Registry-based outcome assessment in haemophilia: a scoping study to explore the available evidence. (Review Symposium). J Intern Med 2016; 279: 502-514.Haemophilia is a congenital disorder with bleeding episodes as its primary symptom. These episodes can result in negative outcomes including joint damage, loss of active days due to hospitalization and reduced quality of life. Effective treatment, however, can improve the outcome. Registries have been used as a valuable source of information regarding the monitoring of treatment and outcome. The two main aims of this exploratory study were to establish which haemophilia registries publish peer-reviewed outcome assessment research and then to extract, classify and report the treatment outcomes and their extent of use in the retrieved registries. Using relevant keywords, we searched PubMed and Web of Science databases for publications during the period 1990-2015. Retrieved references were screened in a stepwise process. Eligible papers were original full articles on haemophilia outcomes that used data from a computerized patient database. Descriptive results were summarized. Of 2352 references reviewed, 25 full texts were eligible for inclusion in the study. These papers were published by 11 registries ranging from local to international in coverage. It is still relatively rare for registries to produce peer-reviewed publications about outcomes, and most that currently do produce such papers are located in Europe and North America. More information is available on traditional outcomes such as comorbidities and arthropathy than on health-related quality of life or the social and developmental impact of haemophilia on patients. Inhibitors, HIV and viral hepatitis are amongst the most commonly reported comorbidities. Research has focused more on factor consumption and less on hospitalization or time lost at school or work due to haemophilia. Haemophilia registries, especially those at the national level, are valuable resources for the delivery of effective health care to patients. Validated outcome measurement instruments are essential for the production of reliable and accurate evidence. Finally, such evidence should be communicated to physicians, patients, the public and health policymakers.

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“…Rozpoznanie częstości występowania inhibitora oraz regularne monitorowanie jego miana jest mierzone w teście Bethesda, z modyfikacją Nijmegen [18,19]. Wyeliminowanie inhibitora u pacjentów z hemofilią to główny cel leczenia, ponieważ umożliwia substytucję z uży-ciem standardowych koncentratów krzepnięcia krwi.…”

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Ocena poziomu jakości życia chorych na hemofilię

Owsianowska

2017

Pomeranian J Life Sci

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Introduction:Haemophilia is a genetic disease. Bleeding, pain, temporary or long-term lack of physical activity, and even the risk of disability could have a negative impact on the quality of life. The aim of the paper is to evaluate the quality of life of patients with haemophilia, and to provide answers to the following questions: 1. What is the quality of life of patients with haemophilia? 2. Which sphere of life is given the highest and which is given the lowest score? 3. Is there a connection between the sociodemographic data, the health situation and the quality of life? Materials and methods: In total 163 adults diagnosed with haemophilia who are mainly treated at home and living in different parts of Poland were included in the survey. All sociodemographic data were collected using an author-designed questionnaire. The quality of life was measured using the WHOQOL-100 questionnaire proposed by World Health Organization. Results: All surveyed patients were males diagnosed with haemophilia A, which is consistent with the epidemiology of the disease and the fact that haemophilia A is more frequent in Poland than haemophilia B. Most of the males (144) were diagnosed with severe haemophilia, 18 with moderate and only 6 with mild haemophilia. What is more, 126 (75%) respondents had type C hepatitis. Conclusions:In the field of 6 life spheres measured with the use of the WHOQOL-100 questionnaire the highest score -14.66 -was gained in the sphere of spirituality, religion and personal beliefs. The lowest score -12.99 -was gained in the physical sphere, mostly concerning pain and feelings of discomfort. The outcome of 12.89 was gained in the environmental sphere. After detailed analysis of the researched material there was a conclusion made: 1. A group of men with inborn haemophilia demonstrate an average quality of life, comparable to the level of life of sick people living in other European countries. 2. The researched group give the highest estimate to the spiritual sphere of life, religion and personal beliefs, while the physical and environmental spheres were given the lowest estimate. 3. The degree of seriousness of haemophilia is of core importance when it comes to the level of life. Type C hepatitis and the status of pensioner is also a serious matter.

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European principles of haemophilia care

Cited by 175 publications

References 43 publications

A survey of characteristics and current educational needs of hemophilia treatment centers within Asia Pacific

A survey of characteristics and current educational needs of hemophilia treatment centers within Asia Pacific

Registry‐based outcome assessment in haemophilia: a scoping study to explore the available evidence

Ocena poziomu jakości życia chorych na hemofilię

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