The Journal of Haemophilia Practice

<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"}

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

Keywords

<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"}

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.

<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"}

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.

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

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.

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

Joint assessment in haemophilia – current physiotherapist practice in the UK

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.

<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

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.

<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"}

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.

<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"}

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.

<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"}

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

<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"}

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Editor-in-Chief Dr Kate Khair, Great Ormond Street Hospital, London, UK Managing Editor Mike Holland, Haemnet, UK 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, University of Exeter, UK Chris Guelcher, Children’s National Hospital, Washington, USA Chris Harrington, Royal Free Hospital, London, UK Cathy Harrison, Sheffield Haemophilia & 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=justify> All manuscripts to The Journal of Haemophilia Practice should be submitted via the Managing Editor: <A href="mailto:mike@haemnet.com">mike@haemnet.com</A>. Each submission should include a covering letter, signed on behalf of all co-authors by the corresponding author, stating that the manuscript is original and has not been published elsewhere or is currently under consideration by another journal (however, we accept that the manuscript may have been submitted to another journal previously). The corresponding author should state clearly whether or not there are any conflicts of interest. Each submission should also include an Open Access License agreement. This can be downloaded via the Supplementary Materials section of the <A href="https://content.sciendo.com/view/journals/jhp/jhp-overview.xml">journal homepage</A> and should be completed by the corresponding author. An Open Access Statement will be added to each manuscript accepted for publication. Authorship <UL> <LI>Authorship should be based on the following four criteria: </LI> <LI>Substantial contributions to the conception or design of the work AND </LI> <LI>Drafting the work or revising it critically for important intellectual content AND </LI> <LI>Final approval of the version to be published; AND </LI> <LI>Agreement to be accountable for all aspects of the work in its entirety. </LI></UL> The corresponding author takes primary responsibility for communication with the journal during the manuscript submission, peer review, and publication process, and typically ensures that all the journal’s administrative requirements, such as providing details of authorship, ethics committee approval, clinical trial registration documentation, and gathering conflict of interest forms and statements, are properly completed, although these duties may be delegated to one or more co-authors. Authors should not submit the same manuscript simultaneously to more than one journal, in the same or different language. Manuscript types All articles should be submitted with a short abstract. For original articles, the abstract should be structured using the following headings: Background, Aims, Materials and Methods, Results and Conclusions. Submissions should also include 3-6 keywords for indexing. We do not specify word counts for articles, but as a guide, shorter items (such as case reports and small cohort studies) would usually range from 1000 to 3000 words. Reviews, larger, studies and qualitative studies, which require explanation of methodologies, may range from 3000 to 7,500 words. Generic drug names should be used in text, tables, and figures. Suppliers of drugs, equipment, and other brand-name material should be credited in parentheses (company, brand name, city, state, country). Reference style The title of journals should be abbreviated according to the style of Index Medicus and spelled out in full if not listed in Index Medicus. Examples of different reference styles are as follows: • Reference to an article Khair K, Holland M, Vidler V, Loran C, Harrington C. Why don't haemophilia nurses do research? Haemophilia 2012; 18: 540-3. • Reference to a book Jones P. Living with Haemophilia. 2002. Oxford: Oxford University Press. • Reference to chapter in a book Escobar MA, Roberts HR. Less common congenital disorders of hemostasis. In: Kitchens CS ed. Consultative Hemostasis and Thrombosis, 3rd edn. Philadelphia, PA: W.B. Saunders Company; 2013: in press. • Reference to a webpage 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/00007 4/human_med_000936.jsp&mid=WC0b01ac058001d124 (accessed 9 September 2013). 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 ICMJE guidelines. 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. </DIV>

<DIV align=justify> 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. CrossCheck Plagiarism Screening System The editorial board is participating in a growing community of CrossCheck System's users in order to ensure that the content published is original and trustworthy. CrossCheck is a medium that allows for comprehensive manuscripts screening, aimed to eliminate plagiarism and provide a high standard and quality peer-review process. Detailed description of the CrossCheck System can be found at: <A href="http://www.crossref.org/crosscheck/index.html">www.crossref.org/crosscheck/index.html</A></DIV>

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The Journal of Haemophilia Practice

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Volume 1 (2014): Issue 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