TY - JOUR
T1 - Unmet needs in the transition to adulthood
T2 - 18- to 30-year-old people with hemophilia
AU - Quon, Doris
AU - Reding, Mark
AU - Guelcher, Chris
AU - Peltier, Skye
AU - Witkop, Michelle
AU - Cutter, Susan
AU - Buranahirun, Cathy
AU - Molter, Don
AU - Jane Frey, Mary
AU - Forsyth, Angela
AU - Tran, Duc Bobby
AU - Curtis, Randall
AU - Hiura, Grant
AU - Levesque, Justin
AU - de la Riva, Debbie
AU - Compton, Matthew
AU - Iyer, Neeraj N.
AU - Holot, Natalia
AU - Cooper, David L.
N1 - Publisher Copyright:
© 2015 Wiley Periodicals, Inc.
PY - 2015/12/1
Y1 - 2015/12/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=84950261882&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84950261882&partnerID=8YFLogxK
U2 - 10.1002/ajh.24219
DO - 10.1002/ajh.24219
M3 - Review article
C2 - 26619193
AN - SCOPUS:84950261882
SN - 0361-8609
VL - 90
SP - S17-S22
JO - American Journal of Hematology
JF - American Journal of Hematology
ER -