The Journal of Haemophilia Practice

The J. of Haemoph Pract ONL

<article-title>Editorial. Reasons to welcome this new journal</article-title>

Editorial. Reasons to welcome this new journal

{"article-title":"Editorial. Reasons to welcome this new journal"}

<abstract><title style='display:none'>Abstract</title> Prophylaxis with factor VIII concentrates is beneficial for adults with severe haemophilia A, but prophylaxis regimens are costly. Guidelines recommend personalised prophylaxis tailored to bleeding phenotype and the result of pharmacokinetic assessments. This article describes a project in which specialist nurses played a pivotal role in identifying a small cohort of patients eligible for dose reduction. Nurses monitored patients following dose reduction, maintaining contact in order to address fears and ensure patient safety. The project led to a substantial cost saving for the Trust and demonstrates the value that nurses can bring to the haemophilia centre.</abstract>

Abstract

<article-title>How specialist nurse-led care can help to lower the costs of prophylaxis</article-title>

How specialist nurse-led care can help to lower the costs of prophylaxis

{"article-title":"How specialist nurse-led care can help to lower the costs of prophylaxis"}

<abstract><title style='display:none'>Abstract</title> Haemophilia A is an X-linked congenital bleeding disorder resulting from a deficiency of factor VIII (FVIII). Therapy to prevent or treat bleeding is by replacement of the missing FVIII. However, as a consequence of treatment, patients with HA may develop inhibitory IgG antibodies to FVIII, termed “inhibitors”. When this occurs, treatment becomes more complex and costly and morbidity increases. Inhibitor formation, occurring in up to 36% of patients with severe HA, is currently one of the most significant complications affecting patients with HA [1,2]. In these two case studies, the management of bleeds in patients with inhibitors, and the long-term inhibitor eradication will be discussed.</abstract>

<article-title>Successful immune tolerance in two children with severe haemophilia A</article-title>

Successful immune tolerance in two children with severe haemophilia A

{"article-title":"Successful immune tolerance in two children with severe haemophilia A"}

<abstract><title style='display:none'>Abstract</title> Two articles in this launch issue of the journal explore the patient experience of haemophilia. To set the context, Martin Bedford explains the grounded theory method, and gives a brief overview of how and when it might be used in haemophilia research.</abstract>

<article-title>An introduction to grounded theory</article-title>

{"article-title":"An introduction to grounded theory"}

<abstract xml:lang="e"><title style='display:none'>Abstract</title> Background: Little is known about where, and from whom children with haemophilia receive support, as there is a paucity of psychosocial research on this topic. This paper, part of a larger study of living with haemophilia, discusses the importance of social support for boys with haemophilia. Methods: Data were collected from 30 boys aged 4-17 years with severe haemophilia A or B from a single Haemophilia Comprehensive Care Centre in the United Kingdom. Age appropriate participatory qualitative research techniques: photo-elicitation, draw and write, focus groups and individual interviews were used. All data were transcribed and the content was analysed using grounded theory. Results: Social support was gained in many ways from individuals who were identified by the study participants as supportive. These included parents, siblings (affected themselves or not), family members (who may also be affected) and friends. Being able to share experiences with others was also described as supportive. Conclusion: The boys in this study described many sources of social support, which changed over time as they grew older. Commentary, J Haem Pract 2014;1(1):23.</abstract>

Keywords

<article-title>‘I can always rely on them’: the importance of social support for boys with haemophilia</article-title>

‘I can always rely on them’: the importance of social support for boys with haemophilia

<abstract><title style='display:none'>Abstract</title> This study examined the perception of the quality of life in a small group of boys (aged 8-15) who have severe haemophilia and have also developed inhibitors and their parents. The study design was a qualitative research methodology using a phenomenology theory approach in order to gain perspectives from participants in a series of semi-structured interviews. The study showed that inhibitor development had an impact on the perceived quality of life of these boys and their families and in so doing threatened the coping mechanisms that had worked effectively for them in the past. Although there is adequate awareness among haemophilia treaters of the psychosocial impact of inhibitor development on family life, this may not always be seen as a priority when managing these boys. The study also identified gaps in the published evidence as well as scope for future study. Commentary, J Haem Pract 2014;1(1):23.</abstract>

<article-title>Boys and parents’ perceptions of living with haemophilia and an inhibitor</article-title>

Boys and parents’ perceptions of living with haemophilia and an inhibitor

{"article-title":"Boys and parents\u2019 perceptions of living with haemophilia and an inhibitor"}

<article-title>Nurse-led research offers unique insights into patients’ psychosocial concerns</article-title>

Nurse-led research offers unique insights into patients’ psychosocial concerns

<abstract><title style='display:none'>Abstract</title> Background: A broad scoping exercise was undertaken to assess and quantify haemophilia nursing care in Europe. Methods: A web-based survey in English was sent to known networks of haemophilia nurses working in Europe. This survey included questions concerning the haemophilia treatment centre, educational level, work activities, gaining knowledge/ expertise and development in the future. Results: In total, 94 nurses in 14 countries in Europe completed the survey. Overall, the majority (62%) of the nurses had over 20 years’ nursing experience, with 44% having more than 10 years’ experience in haemophilia. The educational level varied; with highest educational level of attainment being 41% at nondegree level nursing entry qualification, 35% BSc and 24% MSc. 21% worked in a centre where they treat only children, 26% only adults and 53% both. All had good access to treatment. The core activities (rated &gt;80%) of a haemophilia nurse were: prepare and administer medication, venepuncture and CVADuse (except cannulation), providing education and telephone advice, coordination of (multidisciplinary) care and assistance with clinical trials. Furthermore, 35% stated that they initiated and performed nurse-led research. In the future, almost all nurses would like to develop their expertise and knowledge base by studying at Masters level and above, to have more responsibility, and to conduct research. Conclusion: This scoping exercise provides a baseline assessment of haemophilia nursing across Europe. The results may provide a basis for a more thorough investigation of the current role and the principles of haemophilia nursing care; future opportunities, and the training requirements to develop the specialty.</abstract>

<article-title>The role of the European haemophilia nurse</article-title>

The role of the European haemophilia nurse

{"article-title":"The role of the European haemophilia nurse"}

<abstract><title style='display:none'>Abstract</title> Haemophilia nursing is a relatively young specialty. For early nurses like Maureen Fearns there was no roadmap. She recalls the birth and early tribulations of the HNA</abstract>

<article-title>How nurses built a specialty from scratch</article-title>

How nurses built a specialty from scratch

{"article-title":"How nurses built a specialty from scratch"}

<abstract><title style='display:none'>Abstract</title> The role of the nurse continues to develop, probably at greater speed than ever before. Would Florence Nightingale ever have dreamt of nurses who could manage whole episodes of patient care from diagnosis, through admission, requesting investigations, prescribing treatments and evaluating outcomes? She probably did - when she instigated the first nursing outcome measures looking at infection control. Nurses can and do, do most things. What is important is that they are appropriately trained and continue to develop skills, that are relevant both to them and the patients for whom they care. Assessing this ability, or competence, requires knowledge and skills in itself. In this paper we describe the process of defining competence in haemophilia nursing. Some of these competencies are transferable from other areas of nursing, others are haemophilia-specific. Together they provide a personal development framework for nurses who work within haemophilia as part or all of their role.</abstract>

<article-title>A core competency framework for haemophilia nurses in the UK</article-title>

A core competency framework for haemophilia nurses in the UK

{"article-title":"A core competency framework for haemophilia nurses in the UK"}

<abstract><title style='display:none'>Abstract</title> Kate Forsyth recounts her experiences of a WFH twinning programme with Bangladesh and reveals that where learning is concerned, twinning is a two-way street</abstract>

<article-title>Building a bridge to Bangladesh</article-title>

{"article-title":"Building a bridge to Bangladesh"}

<abstract><title style='display:none'>Abstrat</title> Brian O’Mahony, Chief Executive of the Irish Haemophilia Society and President of the European Haemophilia Consortium, tells Jenny Bryan about the special role that nurses play within the haemophilia community</abstract>

Abstrat

<article-title>Nurses should become more involved in haemophilia research</article-title>

Nurses should become more involved in haemophilia research

{"article-title":"Nurses should become more involved in haemophilia research"}

<abstract>Olivia Timbs was editor of The Pharmaceutical Journal from 2001 to 2012 and in the past wrote regularly for The Times, The Observer and The Independent. Here she offers some simple tips to help you write effectively</abstract>

<article-title>Tips to help you write effectively</article-title>

{"article-title":"Tips to help you write effectively"}

<abstract><title style='display:none'>Abstract</title> Trish Bell is rapidly making a name for herself as the HNA’s resident poet. Here, in her own inimtable way, she tells us of her path towards haemophilia nursing</abstract>

<article-title>The bleeding nurse who discovered verse</article-title>

{"article-title":"The bleeding nurse who discovered verse"}

The Journal of Haemophilia Practice is covered by the following services: <UL> <LI>Baidu Scholar</LI> <LI>Cabell's Whitelist </LI> <LI>CNKI Scholar (China National Knowledge Infrastructure)</LI> <LI>CNPIEC - cnpLINKer</LI> <LI>Dimensions</LI> <LI>EBSCO Discovery Service</LI> <LI>Google Scholar</LI> <LI>J-Gate</LI> <LI>JournalTOCs</LI> <LI>KESLI-NDSL (Korean National Discovery for Science Leaders)</LI> <LI>MyScienceWork</LI> <LI>Naver Academic</LI> <LI>Naviga (Softweco)</LI> <LI>Primo Central (ExLibris)</LI> <LI>QOAM (Quality Open Access Market)</LI> <LI>ReadCube</LI> <LI>Semantic Scholar</LI> <LI>Summon (ProQuest)</LI> <LI>TDNet</LI> <LI>WorldCat (OCLC)</LI></UL>

The Journal of Haemophilia Practice ist in den folgenden Services indiziert: <UL> <LI>Baidu Scholar</LI> <LI>Cabell's Whitelist </LI> <LI>CNKI Scholar (China National Knowledge Infrastructure)</LI> <LI>CNPIEC - cnpLINKer</LI> <LI>Dimensions</LI> <LI>EBSCO Discovery Service</LI> <LI>Google Scholar</LI> <LI>J-Gate</LI> <LI>JournalTOCs</LI> <LI>KESLI-NDSL (Korean National Discovery for Science Leaders)</LI> <LI>MyScienceWork</LI> <LI>Naver Academic</LI> <LI>Naviga (Softweco)</LI> <LI>Primo Central (ExLibris)</LI> <LI>QOAM (Quality Open Access Market)</LI> <LI>ReadCube</LI> <LI>Semantic Scholar</LI> <LI>Summon (ProQuest)</LI> <LI>TDNet</LI> <LI>WorldCat (OCLC)</LI></UL>

Editor-in-Chief Dr Kate Khair, Great Ormond Street Hospital, London, UK Managing Editor Mike Holland, Haemnet, UK <A href="mailto:mike@haemnet.com">mike@haemnet.com</A> Editorial Advisory Board Tami Barazani-Brutman, Sheba Medical Center at Sheba, Tel Hashomer Hospital, Israel Paul Batty, Queen Mary University of London, UK, and Queen’s University, Ontario, Canada Greig Blamey, Health Sciences Center, University of Alberta, Canada Erica Crilly, British Columbia Children's Hospital, Vancouver, Canada Janine Furmedge, The Royal Children’s Hospital Haemophilia Centre, Melbourne, Australia Rich Gorman, Brighton and Sussex Medical School, UK Chris Guelcher, Children’s National Hospital, Washington, USA Chris Harrington, Royal Free Hospital, London, UK Cathy Harrison, Sheffield Haemophilia &amp; Thrombosis Centre, Royal Hallamshire Hospital, Sheffield, UK Dan Hart, The Royal London Hospital and Barts Health NHS Trust, London, UK Adam Jones, University of Sunderland, UK Radek Kaczmarek, Indiana University School of Medicine, USA Sebastien Lobet, Cliniques Universitaires Saint-Luc, Brussels, Belgium Paul McLaughlin, Royal Free Hospital, London, UK Greta Mulders, Erasmus University Medical Center, Rotterdam, The Netherlands James Munn, University of Michigan Hemophilia and Coagulation Disorders Program, Michigan, USA Declan Noone, European Haemophilia Association, Brussels Jamie O'Hara, University of Chester, Cheshire, UK Debra Pollard, Royal Free Hospital, London, UK BJ Ramsay, Wellington Haemophilia Centre, Wellington, New Zealand Dakota J. Rosenfelt, PharmD, Missouri, US Sylvia von Mackensen, Institute of Medical Psychology at the University Medical Centre, Hamburg, Germany Linda Myrin Westesson, Sahlgrenska University Hospital, Gothenburg, Sweden Michelle Witkop, National Hemophilia Foundation, USA Technical Editor Kathryn Jenner, Haemnet, UK Publisher De Gruyter Poland Bogumiła Zuga 32A Str. 01-811 Warsaw, Poland T: +48 22 701 50 15

<DIV align=left> Manuscripts should be submitted via the journal’s Scholar One Manuscripts site: <A href="http://mc04.manuscriptcentral.com/jhaempract">mc04.manuscriptcentral.com/jhaempract</A>. You will need to log in. If you are using Scholar One for the first time, use the ‘Create an Account’ link. One you have logged in, select the ‘Author’ tab. You should then follow the on-screen instructions – the system will guide you through the process of manuscript submission. Alongside the manuscript, accompanying figures and tables, and general information about the manuscript, you will be asked to provide: <UL> <LI>The names of suggested reviewers (optional) </LI> <LI>A cover letter signed on behalf of all co-authors by the corresponding author </LI> <LI>An Open Access License agreement, completed by the corresponding author on behalf of all co-authors (available via the ‘Instructions and Forms’ tab on the journal’s Scholar One Manuscripts site: <A href="http://mc04.manuscriptcentral.com/jhaempract">mc04.manuscriptcentral.com/jhaempract</A>) </LI> <LI>Details of any conflicts of interest </LI> <LI>Confirmation that informed consent has been obtained where appropriate. </LI></UL> After submitting your manuscript, you will receive a confirmation email. You can check on the status of your manuscript at any time by logging in to your Scholar One account. The journal will notify you by email when a decision has been made on your manuscript. Manuscript types The Journal of Haemophilia Practice accepts <UL> <LI>Original research </LI> <LI>Case reports </LI> <LI>Case series </LI> <LI>Reviews in any field of bleeding disorders of relevance to current clinical practice </LI> <LI>Clinical Updates that describe current advances in any clinical field related to bleeding disorders </LI> <LI>Editorials that address a particular topic of current interest. </LI></UL> Please note that case reports should meet the standards outlined in the <A href="https://www.care-statement.org/">CARE Case Report Guidelines</A>. Authors submitting case reports are advised to consult the <A href="https://www.care-statement.org/checklist">CARE Checklist</A>. Manuscript format Wordcount Although we do not specify wordcounts for articles, we recommend the following: <UL> <LI>For shorter papers, e.g. case reports and small cohort studies: 1,000–3,000 words </LI> <LI>For reviews, larger studies and qualitative studies, which require explanation of methodologies: 3,000–7,000 words. </LI></UL> Title The title should be short and informative. For case reports, the words ‘case report’ should be included in the title. Authors Full author names and affiliation should be given. An ORCID iD for each author should be provided where available. Abstract For original articles, a short abstract should be provided using the following headings: Background or Introduction, Aims, Methods, Results, Conclusion. Keywords Submissions should include 3–6 keywords for indexing purposes. Reference style Journal titles should be abbreviated according to the style of Index Medicus and spelled out in full if not listed in Index Medicus. These can be looked up in the <A href="https://www.ncbi.nlm.nih.gov/nlmcatalog/journals">NLM Catalog</A>. The DOI (digital object identifier) associated with journal articles should be provided where available. Where there are six or more authors associated with a reference, the first three should be listed, followed by ‘et al.’ Datasets should be cited using the format outlined by the <A href="https://www.force11.org/datacitationprinciples">Joint Declaration of Data Citation Principles</A>: Authors; Year; Dataset title; Data repository/archive; Version (if relevant); Persistent identifier, e.g. DOI (if available). Reference style examples: <UL> <LI>Reference to an article: </LI></UL> Khair K, Klukowska A, Myrin Westesson L, et al. The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study). Haemophilia 2019; 25(3): 416-423. doi: 10.1111/hae.13736. <UL> <LI>Reference to a book: </LI></UL> Jones P. Living with Haemophilia. 2002. Oxford: Oxford University Press. <UL> <LI>Reference to a chapter in a book: </LI></UL> Escobar MA, Roberts HR. Less common congenital disorders of hemostasis. In: Kitchens CS, ed. Consultative Hemostasis and Thrombosis, 3rd edn. 2013. Philadelphia, PA: W.B. Saunders Company. <UL> <LI>Reference to a webpage/online resource: </LI></UL> European Medicines Agency (EMA). European Public Assessment Report (EPAR) NovoSeven Summary for the Public. 2009. Available from http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/000074/human_med_000936.jsp&amp;mid=WC0b01ac058001d124 (accessed 9 September 2013). Figures and tables Please provide tables and figures at the end of the manuscript or as a separate file. Informed consent People who are reported in studies have a right to privacy that should not be violated without informed consent. Identifying information, including names, initials, dates of birth or hospital numbers, should not be published in written descriptions, photographs or pedigrees unless the information is essential for scientific purposes and the person (or parent or guardian) gives written informed consent for publication. Informed consent for this purpose requires that an identifiable person be shown the manuscript to be submitted for publication. Authors should disclose to these participants whether any potential identifiable material might be available via the internet or in print after publication. Each implicated individual’s consent should be written and archived with the authors. If the patient is a minor or lacks capacity to consent, the written informed consent of a parent or guardian must be given. If the person in the case study is deceased, written consent must be sought from a relative. Without consent, a case report may be considered for publication if the patient is sufficiently anonymised according to <A href="http://www.icmje.org/recommendations/">ICMJE guidelines</A>. Nonessential identifying details should always be omitted. Informed consent should be obtained if there is any doubt that anonymity can be maintained. For example, masking the eye region in photographs of patients is inadequate protection of anonymity. Consent must be mentioned in the manuscript. We reserve the right to request copies of consent documentation. The Editor will make the final determination of what constitutes personally identifiable information on a case-by-case basis. Open Access Statement The journal is an Open Access journal that allows a free unlimited access to all its contents without any restrictions upon publication to all users. <A href="https://sciendo-parsed-data-feed.s3.eu-central-1.amazonaws.com/JHP/Open_Access_License.pdf">Open Access License</A> </DIV>

The Journal of Haemophilia Practice is an international, open-access, peer-reviewed journal that accepts papers from all members of the multidisciplinary bleeding disorders care team. Any manuscript that is relevant to current haemophilia practice will be considered for publication by our editorial review team. To this end, we positively welcome: <UL> <UL> </UL> <LI>Original research </LI> <LI>Case reports </LI> <LI>Case Series </LI> <LI>Reviews in any field of bleeding disorders that are of relevance to current clinical practice </LI> <LI>Clinical Updates that describe current advances in any clinical field related to bleeding disorders </LI> <LI>Editorials that address a particular topic of current interest. </LI> <UL> </UL></UL> All manuscripts submitted to The Journal of Haemophilia Practice will first be subject to a technical review, including a quality check of all the files submitted, including tables, figures and references. This will include a plagiarism check (see below). Manuscripts will then be reviewed by the Editor-in-Chief, who will decide whether or not to proceed to peer-review by members of our editorial board and invited experts. The identity of the reviewers will not be disclosed to the authors. The review procedure will result in one of three decisions: <UL> <UL> </UL> <LI>Accept </LI> <LI>Accept subject to revision </LI> <LI>Reject </LI> <UL> </UL></UL> The editorial decision will be communicated to the authors as soon as the review process has been finalized. In case of revisions, the revised article will be sent to the reviewers who will decide on a new recommendation for revision, acceptance or rejection. The estimated time from the submission to first decision is approximately 4-6 weeks, and from the final revision to acceptance is approximately 2 weeks. Prior to publication, the corresponding author will receive a proof of their article in order to confirm the accuracy of the text or suggest modifications. “The Journal of Haemophilia Practice” is a double-blind peer reviewed journal. The journal has no article processing charges (APCs) nor article submission charges. Archiving Sciendo archives the contents of this journal in <A href="https://www.portico.org/">Portico</A> - digital long-term preservation service of scholarly books, journals and collections. Plagiarism Policy The editorial board is participating in a growing community of <A href="https://www.crossref.org/services/similarity-check/">Similarity Check System's</A> users in order to ensure that the content published is original and trustworthy. Similarity Check is a medium that allows for comprehensive manuscripts screening, aimed to eliminate plagiarism and provide a high standard and quality peer-review process.

Editions

Magazine et Edition

The Journal of Haemophilia Practice

Chercher

Volume 1 (2013): Edition 1 (January 2013)

Détails du journal et du numéro

Chercher

Articles

Editorial

Case Study

Research Tools

Clinical Research

Commentary

Haemophilia Nursing

World View

In My View

New Skills

Poet's Corner