title: Young adults with hemophilia in the U.S.: demographics, comorbidities, and health status.
abstract: Improvements in hemophilia care over the last several decades might lead to expectations of a near-normal quality of life for young adults with hemophilia. However, few published reports specifically examine health status indicators in this population. To remedy this knowledge gap, we examined the impact of hemophilia on physical and social functioning and quality of life among a national US cohort of 141 young men with hemophilia aged 18-34 years of age who received care at 10 geographically diverse, federally funded hemophilia treatment centers in 11 states between 2005 and 2013 and enrolled in the Hemophilia Utilization Group Studies. Indicators studied included educational achievement, employment status, insurance, health-related quality of life, and prevalence of the following comorbidities: pain, range of motion limitation, overweight/obesity, and viral status. The cohort was analyzed to compare those aged 18-24 to those aged 25-34 years. When compared to the general US adult population, this nationally representative cohort of young US adults with hemophilia experienced significant health and social burdens: more liver disease, joint damage, joint pain, and unemployment as well as lower high-school graduation rates. Nearly half were overweight or obese. Conversely, this cohort had higher levels of health insurance and equivalent mental health scores. While attention has typically focused on newborns, children, adolescents, and increasingly, on older persons with hemophilia, our findings suggest that a specific focus on young adults is warranted to determine the most effective interventions to improve health and functioning for this apparently vulnerable age group.
authors.affiliation: Factor VIII Computing, Berkeley, California.
authors.forename: Randall
authors.initials: R
authors.lastname: Curtis
authors.affiliation: The Center for Comprehensive Care & Diagnosis of Inherited Blood Disorders, Orange, CA and University of California Los Angeles, California.
authors.forename: Judith
authors.initials: J
authors.lastname: Baker
authors.affiliation: University of Colorado, Hemophilia and Thrombosis Center, Aurora, Colorado.
authors.forename: Brenda
authors.initials: B
authors.lastname: Riske
authors.affiliation: Gulf States Hemophilia & Thrombophilia Center, University of Texas Health Science Center at Houston, Texas.
authors.forename: Megan
authors.initials: M
authors.lastname: Ullman
authors.affiliation: University of Southern California, Los Angeles, California.
authors.forename: Xiaoli
authors.initials: X
authors.lastname: Niu
authors.affiliation: University of Colorado, Hemophilia and Thrombosis Center, Aurora, Colorado.
authors.forename: Kristi
authors.initials: K
authors.lastname: Norton
authors.affiliation: University of Southern California, Los Angeles, California.
authors.forename: Mimi
authors.initials: M
authors.lastname: Lou
authors.affiliation: University of Southern California, Los Angeles, California.
authors.forename: Michael B
authors.initials: MB
authors.lastname: Nichol
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000367:Age Factors; D018771:Arthralgia / Q000453:epidemiology / Q000523:psychology; D059350:Chronic Pain / Q000453:epidemiology / Q000523:psychology; D015897:Comorbidity; D005260:Female; D006306:Health Surveys; D006467:Hemophilia A / Q000191:economics / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D006801:Humans; D019458:Insurance Coverage / Q000706:statistics & numerical data; D008107:Liver Diseases / Q000453:epidemiology; D008297:Male; D008603:Mental Health; D050177:Overweight / Q000453:epidemiology; D015995:Prevalence; D011446:Prospective Studies; D011788:Quality of Life; D016059:Range of Motion, Articular; D012959:Socioeconomic Factors; D016896:Treatment Outcome; D014481:United States / Q000453:epidemiology; D014777:Virus Diseases / Q000453:epidemiology; D055815:Young Adult / Q000523:psychology