The Journal of Haemophilia Practice

The J. of Haemoph Pract ONL

<article-title>We must tackle inequalities in care</article-title>

{"article-title":"We must tackle inequalities in care"}

<article-title>A care pathway to cut your teeth on</article-title>

{"article-title":"A care pathway to cut your teeth on"}

<abstract><title style='display:none'>Abstract</title> Royal London Hospital is a major referral centre for children with inherited bleeding disorders (IBD). Dental caries and periodontal disease can be prevented, which is especially important in these children to avoid invasive treatment. For this reason a care pathway has been established, focusing on appropriate prevention advice and treatment A Paediatric Dental Specialist attends the monthly Paediatric Haematology clinics. Children are screened for untreated dental decay and preventive dental advice is given verbally along with a patient information leaflet. At the clinic, a letter is sent out to the patient’s general dental practitioner (GDP). Nonregistered patients are directed to NHS Choices website to find a local NHS GDP. Liaison of GDPs with both haematology and hospital paediatric dental services is actively encouraged to support the provision of dental care within the primary care setting, particularly routine preventive care. Depending on the severity of the bleeding diathesis and the degree of invasive dental treatment required, the GDP may undertake simple treatment or, in more complex cases, may arrange a referral to the Royal London Dental Hospital. A consultation process takes place between paediatric dentist, paediatric haematologist and specialist nurse to determine the most appropriate haematological cover for each patient. This will depend on the severity of the bleeding disorder, the complexity of dental treatment and the need for local anaesthesia. The date of the dental visits and the haemostatic cover are requested via the electronic patient record so that it is accessible to all clinicians involved in their care without the need to retrieve their paper notes. This pathway encourages active involvement of the patients’ GDP and allows the patient to be treated as safely as possible in a timely manner. The care pathway has helped to formalise dental treatment for children with IBD and to improve every health care professional’s understanding of their role in this care.</abstract>

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<article-title>A dental care pathway for children with inherited bleeding disorders</article-title>

A dental care pathway for children with inherited bleeding disorders

{"article-title":"A dental care pathway for children with inherited bleeding disorders"}

<abstract><title style='display:none'>Abstract</title> The concentration of expertise in haemophilia treatment centres means that patients in most countries live a considerable distance from their treatment centre. Telephone support between regular clinic visits is common practice. This article describes the six principles that broadly outline nurses’ accountabilities when providing care over the telephone and discusses how they have been applied in practice with the Canadian Association of Nurses in Hemophilia Care (CANHC) telephone guidelines.</abstract>

<article-title>Decision-support tool for telephone triage — the Canadian experience</article-title>

Decision-support tool for telephone triage — the Canadian experience

{"article-title":"Decision-support tool for telephone triage \u2014 the Canadian experience"}

<abstract><title style='display:none'>Abstarct</title> Haemophilia is the oldest known rare genetic bleeding disorder that disrupts the blood clotting process. Although the level of haemophilia care has improved substantially, the problems of management in developing countries are poor awareness, high costs of treatment, inadequate diagnostic and coagulation screening facilities and scarce factor concentrates for therapy. We present here the problems in the perioperative management of a case of haemophilia A in India. It portrays the current picture of haemophilia management in many developing countries around the world.</abstract>

Abstarct

<article-title>The perioperative management of haemophilia: easier said than done Joint assessment in haemophilia – current physiotherapist practice in the UK</article-title>

The perioperative management of haemophilia: easier said than done Joint assessment in haemophilia – current physiotherapist practice in the UK

<abstract><title style='display:none'>Abstract</title> Aim: UK guidelines recommend regular assessment of joint status in children with haemophilia using a standardised tool performed by haemophilia physiotherapists. We surveyed UK physiotherapists working in haemophilia care regarding their current practice with respect to joint scoring. Methods: A survey was posted on SurveyMonkey and all haemophilia physiotherapists practising in the UK were invited to respond. Responses were analysed and discussed at a roundtable meeting attended by invited physiotherapists and specialist haemophilia nurses. Results: In all, responses were received from 29 of the estimated 37 physiotherapists in the UK who see haemophilia patients. Both the survey and subsequent discussion reflected agreement that joint scoring offers a valuable tool to clinicians, but that better ways of assessing joint health were needed. There was enthusiasm for combining joint scoring with systematic and validated patient-reported outcome measures. Conclusion: Greater understanding is needed of the relationship between joint scores and measures of physical function and quality of life.</abstract>

<article-title>Joint assessment in haemophilia – current physiotherapist practice in the UK</article-title>

Joint assessment in haemophilia – current physiotherapist practice in the UK

<abstract><title style='display:none'>Abstract</title> Introduction: Haemophilia causes joint, muscle and soft tissue bleeds, often leading to pain and disability. These effects can have a significant impact on patients’ well-being and quality of life. There is a need to better understand patient priorities and concerns so that haemophilia healthcare professionals can develop strategies to meet these needs with individuals and their families. Methods: The HaemophiliaLIVE ethnographic study enrolled 16 families from four comprehensive care centres in the UK. Each family received a kit consisting of video recording equipment, seven sealed envelopes each containing a “secret question” and pre-paid envelopes for secure return of the video memory cards. Video footage was recorded daily to examine the impact of haemophilia. Results: Over 30 hours of recorded footage was obtained from 10 families with children/young adults, two young adults, and three older men. Six participants had a current inhibitor. The key themes identified were impact on: family relationships, school, employment and travel. The older participants and those with inhibitors reported that pain was a major factor in their day-to-day lives, and also expressed fear about loss of mobility and pending surgery. Although parents expressed anger and sadness about their child’s haemophilia, those with haemophilia were generally positive about their life experiences. Many reported that their employers were understanding and made additional provision for their haemophilia. Conclusions: Haemophilia has a significant impact on patients and their families. This research provides insight on the support needs of individuals and families.</abstract>

<article-title>HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life</article-title>

HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life

<abstract><title style='display:none'>Abstract</title> A case study is presented illustrating the everyday challenges faced by patients with haemophilia and inhibitors and how treatment with bypassing agents or just FEIBA prophylaxis can help to control bleeding and improve functional ability.</abstract>

<article-title>FEIBA prophylaxis in a patient with haemophilia and inhibitors</article-title>

FEIBA prophylaxis in a patient with haemophilia and inhibitors

{"article-title":"FEIBA prophylaxis in a patient with haemophilia and inhibitors"}

<article-title>2015 Conference And Agm</article-title>

{"article-title":"2015 Conference And Agm"}

<abstract><title style='display:none'>Abstract</title> Haemophilia care in South Africa faces a number of challenges and nurses can play a significant role in addressing these and raising standards of practice. This report considers those challenges and steps taken by the country as it has attempted to meet them. It also summarises the key themes that arose from a nursing workshop held November 2013 as part of a MASAC symposium and facilitated by the authors.</abstract>

<article-title>Nurses can meet the challenge of haemophilia care in South Africa</article-title>

Nurses can meet the challenge of haemophilia care in South Africa

{"article-title":"Nurses can meet the challenge of haemophilia care in South Africa"}

<abstract><title style='display:none'>Abstract</title> The World Federation of Hemophilia’s world congress in Melbourne offered haemophilia nurses from across the world an opportunity to meet and share knowledge and experience in a friendly and supportive setting.</abstract>

<article-title>WFH in Melbourne: the long march of the haemophilia nurse continues</article-title>

WFH in Melbourne: the long march of the haemophilia nurse continues

{"article-title":"WFH in Melbourne: the long march of the haemophilia nurse continues"}

<abstract><title style='display:none'>Abstract</title> Save One Life and Project SHARE were founded on the belief that offering aid to those with bleeding disorders in developing countries must be accompanied by support for growth and development. Managing editor Mike Holland caught up with the prime movers behind the two operations</abstract>

<article-title>How aid can help the haemophilia community learn to develop Karin Lindvall - an appreciation Karin Lindvall - an appreciation</article-title>

How aid can help the haemophilia community learn to develop Karin Lindvall - an appreciation Karin Lindvall - an appreciation

<article-title>Karin Lindvall - an appreciation</article-title>

{"article-title":"Karin Lindvall - an appreciation"}

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 </li> <li> ExLibris </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> QOAM (Quality Open Access Market) </li> <li> ReadCube </li> <li> Semantic Scholar </li> <li> TDNet </li> <li> WorldCat (OCLC) </li> <li> X-MOL </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 </li> <li> ExLibris </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> QOAM (Quality Open Access Market) </li> <li> ReadCube </li> <li> Semantic Scholar </li> <li> TDNet </li> <li> WorldCat (OCLC) </li> <li> X-MOL </li> </ul>

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.

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>

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The Journal of Haemophilia Practice

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Volumen 1 (2014): Heft 3 (October 2014)

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Artikel

Editorial

Policy and Practice

Practical Challenges In Management

Clinical Practice

Clinical Research

Case Study

Nursing Focus

Community Profile

Obituary