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From boy to man: recommendations for the transition process in haemophilia
1Children's Hospital Los Angeles and University of Southern California Keck School of Medicine, Los Angeles, CA 90027, USA. gyoung@chla.usc.edu
Insights
Managing haemophilia requires a continuous transition plan from birth through adulthood. This comprehensive approach addresses medical and psychosocial needs, fostering independence in young patients.
Area of Science:
- Hematology
- Pediatric Care
- Transition Medicine
Background:
- Haemophilia is a chronic genetic bleeding disorder diagnosed in early childhood.
- It can lead to serious complications like arthropathy.
- Patient management requires adapting care throughout development.
Purpose of the Study:
- To define transition as a continuous process from birth to adulthood for haemophilia patients.
- To outline medical and psychosocial issues during this transition.
- To emphasize the importance of a structured transition plan.
Main Methods:
- Reviewing the concept of transitional issues in haemophilia care.
- Defining transition beyond adolescence to encompass childhood and adulthood.
- Categorizing transition challenges into medical and psychosocial aspects.
Main Results:
- Transition in haemophilia care is a lifelong, phased process.
- Both medical and psychosocial factors are critical during transition.
- A structured plan supports the shift from dependence to independence.
Conclusions:
- A comprehensive transition plan is essential for haemophilia patients.
- This plan facilitates the journey from childhood dependence to adult independence.
- Addressing medical and psychosocial needs ensures optimal outcomes.
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.
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