Literature DB >> 19125936

Haemophilia care in adolescents--compliance and lifestyle issues.

P Petrini1, A Seuser.   

Abstract

Adolescence is characterized by simultaneous physical, psychological, social and sexual changes that compound the challenges faced by parents, health care providers and adolescent haemophilia patients themselves. Compliance with prophylactic factor replacement therapy frequently declines when patients pass from childhood to adolescence. Familiarity with long-term joint damage is lacking among the current generation of children who have grown up with prophylactic treatment and the tendency of teenagers to focus primarily on short-term goals increases the likelihood that regular prophylactic replacement therapy receives low priority. Most adolescents continue prophylactic treatment prior to physical or social activities because short-term goals are more likely to be perceived as relevant. The most important factor that influences compliance is support from parents, peers and caregivers, who provide encouragement and support active participation in health care management. During adolescence, personalized treatment strategies that suit the patient and his lifestyle are essential to ensure optimal outcomes. Physical activity is important for all adolescents and can contribute to better coordination, endurance, flexibility and strength. Physical training also contributes to healthier joints and reduces the risk of bleeding episodes in teenagers with haemophilia; however, the selection of an appropriate sport that minimizes the risk of injury and matches the patient's skill and needs is important. Children with haemophilia may have disease-related functional deficits and often exhibit subclinical findings in the joints; therefore an orthopaedic examination, fitness check and motion analysis may assist in guiding preventive physiotherapy and the choice of sport.

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Year:  2009        PMID: 19125936     DOI: 10.1111/j.1365-2516.2008.01948.x

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


  13 in total

Review 1.  Practical aspects of extended half-life products for the treatment of haemophilia.

Authors:  Thierry Lambert; Gary Benson; Gerry Dolan; Cedric Hermans; Victor Jiménez-Yuste; Rolf Ljung; Massimo Morfini; Silva Zupančić-Šalek; Elena Santagostino
Journal:  Ther Adv Hematol       Date:  2018-09-06

2.  Prophylaxis therapy in paediatric patients with haemophilia: a survey of clinical management trends in Italy.

Authors:  Giancarlo Castaman; Angiola Rocino; M Gabriella Mazzucconi; Ezio Zanon; Fabio Gagliano; Angelo C Molinari
Journal:  Blood Transfus       Date:  2015-05-14       Impact factor: 3.443

3.  Haemophilia at various stages of life: design of new therapeutic strategies through an interactive course--the Kogeniale project.

Authors:  Elena Santagostino; Maria Messina; Annarita Tagliaferri; Alfonso Iorio; Massimo Morfini
Journal:  Blood Transfus       Date:  2013-01-23       Impact factor: 3.443

Review 4.  Strategies to encourage physical activity in patients with hemophilia to improve quality of life.

Authors:  Miwa Goto; Hideyuki Takedani; Kazuhiko Yokota; Nobuhiko Haga
Journal:  J Blood Med       Date:  2016-05-17

Review 5.  Hemophilia Care in the Pediatric Age.

Authors:  Marta Bertamino; Francesca Riccardi; Laura Banov; Johanna Svahn; Angelo Claudio Molinari
Journal:  J Clin Med       Date:  2017-05-19       Impact factor: 4.241

6.  Adherence to Prophylaxis in Adolescents and Young Adults with Severe Haemophilia: A Quantitative Study with Patients.

Authors:  Sandra B van Os; Nick A Troop; Keith R Sullivan; Daniel P Hart
Journal:  PLoS One       Date:  2017-01-19       Impact factor: 3.240

7.  Evaluation of early musculoskeletal disease in patients with haemophilia: results from an expert consensus.

Authors:  Axel Seuser; Claudia Djambas Khayat; Claude Negrier; Adly Sabbour; Lily Heijnen
Journal:  Blood Coagul Fibrinolysis       Date:  2018-09       Impact factor: 1.276

8.  Health care professionals dealing with hemophilia: insights from the international qualitative study of the HERO initiative.

Authors:  Silvia Potì; Laura Palareti; Frederica Rmy Cassis; Sonia Brondi
Journal:  J Multidiscip Healthc       Date:  2019-05-09

9.  The Hemarthrosis-Simulating Knee Model: A Useful Tool for Individualized Education in Patients with Hemophilia (GEFACET Study).

Authors:  Sophie le Doré; Nathalie Grinda; Emmanuelle Ferré; Valerie Roussel-Robert; Birgit Frotscher; Pierre Chamouni; Sandrine Meunier; Sophie Bayart; Edita Dolimier; Francoise Truong-Berthoz; Emmanuelle de Raucourt
Journal:  J Blood Med       Date:  2021-03-09

10.  Barriers and perceived limitations to early treatment of hemophilia.

Authors:  Kapil Saxena
Journal:  J Blood Med       Date:  2013-05-16
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