Literature DB >> 26679395

Challenges in the management of haemophilia on transition from adolescence to adulthood.

Brigitte Brand1, Spencer Dunn2, Roshni Kulkarni3.   

Abstract

Patients with haemophilia undergo many transitions during their lives, but the period between adolescence and adulthood is particularly challenging. During this time, the patient must deal with all of the typical biological, social and emotional changes associated with this phase of life, whilst at the same time, adapting his lifestyle to the needs of his condition, transferring from paediatric to adult services and, most importantly, accepting increasing (and ultimately full) responsibility for managing his condition. Parents may also find their diminishing role equally challenging. Perhaps not surprisingly, given the challenges that adolescents face, treatment adherence during this time is generally low, which can lead to recurrent joint bleeds, chronic pain and reduced quality of life. To address the challenges, it is critical that a transition programme is put in place that meets the needs of not only the patient, but also his parents and healthcare providers. Key elements of the plan are a multidisciplinary approach, early planning, patient education and appropriate follow-up. A successful programme will equip all parties with the skills to deal with the challenges of transition from adolescence to adulthood, ensuring that the benefits of treatment in childhood are maintained, thus optimising health outcomes and quality of life.
© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Entities:  

Keywords:  adolescents; adults; haemophilia; multidisciplinary; transition

Mesh:

Year:  2015        PMID: 26679395     DOI: 10.1111/ejh.12582

Source DB:  PubMed          Journal:  Eur J Haematol        ISSN: 0902-4441            Impact factor:   2.997


  6 in total

1.  Limited sampling strategies for accurate determination of extended half-life factor VIII pharmacokinetics in severe haemophilia A patients.

Authors:  Alanna McEneny-King; Pierre Chelle; Margaret H Goggans; Patricia J Barker; Timothy W Jacobs; Ellis J Neufeld; Ulrike M Reiss; John C Panetta
Journal:  Haemophilia       Date:  2021-03-20       Impact factor: 4.263

Review 2.  Treatment adherence in hemophilia.

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

Review 3.  Categorizing factors of adherence to parenteral treatment in growth hormone deficiencies and hemophilia: What should be the targets for future research?

Authors:  Serge Sultan; Mira El-Hourani; Émélie Rondeau; Nicolas Garnier
Journal:  Patient Prefer Adherence       Date:  2018-10-08       Impact factor: 2.711

4.  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

5.  The Perspectives of Adolescents and Young Adults on Adherence to Prophylaxis in Hemophilia: A Qualitative Study.

Authors:  J W Hoefnagels; M C Kars; K Fischer; Reg Schutgens; L H Schrijvers
Journal:  Patient Prefer Adherence       Date:  2020-01-23       Impact factor: 2.711

6.  Multidisciplinary Team Care of Patients with Hemophilic Arthropathy: A Qualitative Assessment of Contemporary Practice in the UK and Canada : Canada/UK: MDT Practices for Hemophilia.

Authors:  Jean St-Louis; Pratima Chowdary; Gerry Dolan; Dawn Goodyear; Karen Strike; Debra Pollard; Jerry Teitel
Journal:  Clin Appl Thromb Hemost       Date:  2022 Jan-Dec       Impact factor: 2.389

  6 in total

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