Unmet needs in the transition to adulthood: 18‐ to 30‐year‐old people with hemophilia

Abstract

Young adults with hemophilia face unique challenges during the transition to adulthood, including issues associated with switching from pediatric to adult hematology care, building mature interpersonal relationships, and establishing an independent career with an assurance of medical insurance coverage. A greater understanding of these challenges is essential for developing effective strategies to address the specific needs of this population. These challenges may be differentiated from those of older adults with hemophilia in large part because of more extensive childhood prophylaxis and safer factor products, resulting in fewer joint problems and lower rates of HIV and HCV infections. This analysis of the changing nature and unmet needs of today's young adults entering into adult hemophilia treatment centers, as well as potential strategies for optimally addressing these needs, was developed following roundtable discussions between patients, caregivers, hematologists, and other health care professionals participating in comprehensive care. Challenges identified among young adults with hemophilia include psychosocial issues related to maturity, personal responsibility, and increased independence, as well as concerns regarding when and with whom to share information about one's hemophilia, limited awareness of educational and financial resources, and a low perceived value of regular hematology care. The initiatives proposed herein highlight important opportunities for health care professionals at pediatric and adult hemophilia treatment centers, as well as national organizations, community groups, and career counselors, to address key unmet needs of this patient population. Am. J. Hematol. 90:S17–22, 2015. © 2015 Wiley Periodicals, Inc.

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

“…Many adolescents consider themselves in good health, they feel able to participate in normal activities and perceive their disease as having little impact on their lives and opportunities . This development of normalization may explain why some YWH today perceive treatment adherence and follow‐up adult care as less important than caregivers and older patients . Hence, although PTX improves patients’ physical QoL, treatment itself may lead to poorer psychosocial QoL and non‐adherence .…”

“…Full self‐management includes “the ability to seek, understand and apply health information to participate in health decisions and the daily management of symptoms and treatment as well as the physical and psychosocial consequences and lifestyle changes following from chronic disease” . These abilities may be extraordinarily challenged by the physical, cognitive and psychosocial changes occurring in YWH …”

“…A total of 73 journal articles were selected for full‐text analysis comprising 10 reviews and 12 studies including qualitative research methods . Most remaining articles used quantitative research methods only; nine were commentaries or expert panel reports …”

“…Among haemophilic patients in the Western world, adolescents (13‐17‐year‐olds) and young adults (18 to 25‐30‐year‐olds depending on the study) reportedly have the lowest adherence levels compared to other age groups . These patients go through major physical and psychosocial changes challenging the transition to self‐care …”

An innovative outcome-based care and procurement model of hemophilia management

“…Consequently, inadequate degrees of adherence and concordance can result in higher bleeding rates [54,55]. Adolescents have 20-30% lower compliance than infants (aged <2 years) and adults (aged >25 years), and 2.5 times higher rates of bleeding events [56][57][58]. Therefore, an innovative approach to care aimed at improving compliance can have important effects on treatment outcomes [29] and represents a considerable achievement for all hemophilia stakeholders.…”