Literature DB >> 22757681

From boy to man: recommendations for the transition process in haemophilia.

Guy Young1.   

Abstract

Haemophilia is a life-long genetic disorder most often diagnosed in early childhood which results in bleeding into deep tissues and can result in arthropathy and, rarely, other serious complications. As a result of the natural physical and cognitive development in children, combined with the manner in which haemophilia is treated, there is a continuous process of changes in the approach to patient management, which collectively are called transitional issues. It is important to point out that while some traditional definitions of transition are limited to the stage when an adolescent becomes an adult and how the mode and delivery of care change during this time, a broader definition incorporating all the changes that occur from birth through adulthood will be described in this article. As such, transition should be thought of as a continuous process, though for the sake of clarity and practicality, we will divide the process into several phases. The transition issues to be discussed will be divided into medical issues and psychosocial issues, though there is clearly overlap between the two. A well-developed transition plan from birth to adulthood for patients with haemophilia facilitates the necessary change from total dependence on caregivers to complete independence by the time one reaches 18 years of age.
© 2012 Blackwell Publishing Ltd.

Entities:  

Mesh:

Substances:

Year:  2012        PMID: 22757681     DOI: 10.1111/j.1365-2516.2012.02893.x

Source DB:  PubMed          Journal:  Haemophilia        ISSN: 1351-8216            Impact factor:   4.287


  7 in total

Review 1.  Point-of-care ultrasonography (POCUS) in hemophilia A: a commentary on current status and its potential role for improving prophylaxis management in severe hemophilia A.

Authors:  Suchitra S Acharya; Brittny Rule; Omar McMillan; Thomas J Humphries
Journal:  Ther Adv Hematol       Date:  2017-02-13

2.  Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children.

Authors:  Sarah Bérubé; Florine Mouillard; Claudine Amesse; Serge Sultan
Journal:  BMC Pediatr       Date:  2016-01-11       Impact factor: 2.125

Review 3.  Treatment adherence in hemophilia.

Authors:  Courtney D Thornburg; Natalie A Duncan
Journal:  Patient Prefer Adherence       Date:  2017-09-27       Impact factor: 2.711

4.  Inhibitor clinical burden of disease: a comparative analysis of the CHESS data.

Authors:  Abiola O Oladapo; Mei Lu; Shaun Walsh; Jamie O'Hara; Teresa L Kauf
Journal:  Orphanet J Rare Dis       Date:  2018-11-09       Impact factor: 4.123

5.  Determinants of adherence and consequences of the transition from adolescence to adulthood among young people with severe haemophilia (TRANSHEMO): study protocol for a multicentric French national observational cross-sectional study.

Authors:  Noémie Resseguier; Natacha Rosso-Delsemme; Any Beltran Anzola; Karine Baumstarck; Vanessa Milien; Laurent Ardillon; Sophie Bayart; Claire Berger; Marie-Anne Bertrand; Christine Biron-Andreani; Annie Borel-Derlon; Sabine Castet; Pierre Chamouni; Ségolène Claeyssens Donadel; Emmanuelle De Raucourt; Dominique Desprez; Céline Falaise; Birgit Frotscher; Valérie Gay; Jenny Goudemand; Yves Gruel; Benoît Guillet; Annie Harroche; Abel Hassoun; Yoann Huguenin; Thierry Lambert; Aurélien Lebreton; Anne Lienhart; Michèle Martin; Sandrine Meunier; Fabrice Monpoux; Guillaume Mourey; Claude Negrier; Philippe Nguyen; Placide Nyombe; Caroline Oudot; Brigitte Pan-Petesch; Benoît Polack; Anne Rafowicz; Antoine Rauch; Delphine Rivaud; Pascale Schneider; Alexandra Spiegel; Cecile Stoven; Brigitte Tardy; Marc Trossaërt; Jean-Baptiste Valentin; Stéphane Vanderbecken; Fabienne Volot; Annelise Voyer-Ebrard; Bénédicte Wibaut; Tanguy Leroy; Thomas Sannie; Hervé Chambost; Pascal Auquier
Journal:  BMJ Open       Date:  2018-07-25       Impact factor: 2.692

6.  Medication Adherence for Haemophilia Patients: Outcome of Prophylaxis Treatment Intervention.

Authors:  Fadzlin Mohd Mokhtar; Jameela Sathar; Hasniza Zaman Huri
Journal:  Healthcare (Basel)       Date:  2021-12-08

7.  Recombinant Factor VIII Fc Fusion Protein (rFVIIIFc) in Real Life: One-Year Clinical and Economic Outcomes.

Authors:  Romain Giraud; Nicolas Delmotte; Sophie Gensollen; Martine Roche; Céline Falaise; Hervé Chambost; Manon Roche
Journal:  Drugs Real World Outcomes       Date:  2021-06-25
  7 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.