title: 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.
authors.affiliation: Orthopaedic Hemophilia Treatment Center, Orthopaedic Institute for Children, Los Angeles, California.
authors.forename: Doris
authors.initials: D
authors.lastname: Quon
authors.affiliation: University of Minnesota Medical Center, Minneapolis, Minnesota.
authors.forename: Mark
authors.initials: M
authors.lastname: Reding
authors.affiliation: Children's National Health System, Washington, DC.
authors.forename: Chris
authors.initials: C
authors.lastname: Guelcher
authors.affiliation: Oregon Health & Science University, Portland, Oregon.
authors.forename: Skye
authors.initials: S
authors.lastname: Peltier
authors.affiliation: Munson Medical Center, Traverse City, Michigan.
authors.forename: Michelle
authors.initials: M
authors.lastname: Witkop
authors.affiliation: Penn Comprehensive Hemophilia and Thrombosis Center, University of Pennsylvania Medical Center, Philadelphia, Pennsylvania.
authors.forename: Susan
authors.initials: S
authors.lastname: Cutter
authors.affiliation: Children's Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, California.
authors.forename: Cathy
authors.initials: C
authors.lastname: Buranahirun
authors.affiliation: Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana.
authors.forename: Don
authors.initials: D
authors.lastname: Molter
authors.affiliation: Children's Hospital of Michigan, Detroit, Michigan.
authors.forename: Mary Jane
authors.initials: MJ
authors.lastname: Frey
authors.affiliation: BioRx, Mason, Ohio.
authors.forename: Angela
authors.initials: A
authors.lastname: Forsyth
authors.affiliation: Emory University School of Medicine, Atlanta, Georgia.
authors.forename: Duc Bobby
authors.initials: DB
authors.lastname: Tran
authors.affiliation: Factor VIII Computing, Berkeley, California.
authors.forename: Randall
authors.initials: R
authors.lastname: Curtis
authors.affiliation: National Hemophilia Foundation, New York, New York.
authors.forename: Grant
authors.initials: G
authors.lastname: Hiura
authors.affiliation: FOLX, Portland, Maine.
authors.forename: Justin
authors.initials: J
authors.lastname: Levesque
authors.affiliation: Lone Star Chapter of the National Hemophilia Foundation, Houston, Texas.
authors.forename: Debbie
authors.initials: D
authors.lastname: de la Riva
authors.affiliation: Adult Patient, Compton Consulting LLC, Simi Valley, California.
authors.forename: Matthew
authors.initials: M
authors.lastname: Compton
authors.affiliation: Clinical Development, Medical and Regulatory Affairs, Novo Nordisk Inc, Plainsboro, New Jersey.
authors.forename: Neeraj N
authors.initials: NN
authors.lastname: Iyer
authors.affiliation: Clinical Development, Medical and Regulatory Affairs, Novo Nordisk Inc, Plainsboro, New Jersey.
authors.forename: Natalia
authors.initials: N
authors.lastname: Holot
authors.affiliation: Clinical Development, Medical and Regulatory Affairs, Novo Nordisk Inc, Plainsboro, New Jersey.
authors.forename: David L
authors.initials: DL
authors.lastname: Cooper
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000554:Ambulatory Care Facilities / Q000600:supply & distribution; D017028:Caregivers / Q000523:psychology; D003376:Counseling; D004651:Employment; D005260:Female; D006040:Goals; D006282:Health Personnel / Q000523:psychology; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006467:Hemophilia A / Q000150:complications / Q000188:drug therapy / Q000191:economics / Q000523:psychology; D006470:Hemorrhage / Q000209:etiology / Q000628:therapy; D006801:Humans; D057187:Independent Living; D007398:Interpersonal Relations; D008297:Male; D010349:Patient Compliance; D011369:Professional-Patient Relations; D011584:Psychology; D000297:Psychology, Adolescent; D060305:Transition to Adult Care; D014481:United States; D055815:Young Adult / Q000523:psychology*