Transition - Not Just Transfer from Dependence to Independence

Introduction and Overview

Transition is an important concept in the management of all patients, including those with hemophilia. The term transition has most often been used by health care providers when describing the physical shift of care from one center to another, or the transfer from a pediatric health care team to an adult one. A broader definition of transition includes changes that occur throughout one’s life, in which new skills are acquired and independence is achieved. Important transitions occur as all children grow and mature from toddlerhood to childhood, from childhood to teenage years, and then to young and older adulthood. With each progression along this continuum, multiple transitions must occur in order to gain independent ownership of health and self-advocacy.1

For persons with hemophilia, important early transitions include learning to recognize a bleed and learning how to self-infuse with factor. In late adolescence and early adulthood, moving away from home, living independently, and making choices regarding career and health insurance become decisions that can impact health status. Later in life, important transitions might include marriage, elective surgical procedures, and dealing with comorbidities and aging.

Historically, the management of hemophilia was targeted to the treatment of bleeds and the management of comorbidities such as human immunodeficiency virus (HIV) and hepatitis C virus (HCV). Access to safer products and the standard use of prophylaxis has allowed a shift of focus to a broader definition of health. It is important to recognize that determinants of health may include emotional, psychosocial, and financial issues. Barriers to the optimization of these determinants can have a profound impact on health and quality of life. Health care providers must understand these larger issues and the challenges their patients face in the transitions across the age and life continuum in order to provide effective anticipatory guidance. Embracing a broader definition of transitions in health is important in order to develop effective and personalized hemophilia treatment strategies.

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