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2490 Hematology Utilization Group Studies Part VII (HUGS VII): Costs and Impact of Disease in Older Persons with Hemophilia

Program: Oral and Poster Abstracts
Session: 901. Health Services Research—Non-Malignant Conditions: Poster II
Hematology Disease Topics & Pathways:
Adult, Elderly, Study Population
Sunday, December 6, 2020, 7:00 AM-3:30 PM

Randall Curtis, MBA1*, Marilyn J Manco-Johnson, MD2, Barbara A. Konkle, MD3, Roshni Kulkarni, MD4, Joanne Wu, MD, MS5*, Judith Baker, DrPH, MHSA6*, Megan M. Ullman, MA, MPH7*, Duc Quang Tran Jr., MD8 and Michael B. Nichol, PhD9*

1Factor VIII Computing, Berkeley, CA
2University of Colorado Denver Hemophilia and Thrombosis Center, Aurora, CO
3University of Washington, Washington Center for Bleeding Disorders, Seattle, WA
4Michigan State University Center for Bleeding and Clotting Disorders, East Lansing, MI
5University Of Southern California, Los Angeles, CA
6Center for Inherited Blood Disorders, Orange, CA
7Gulf States Hemophilia & Thrombophilia Center, University of Texas Health Science Center at Houston, Houston, TX
8Emory University, Hemophilia of Georgia Center for Bleeding & Clotting Disorders of Emory, Atlanta, GA
9University of Southern California, Los Angeles, CA


Improved care and prophylactic factor replacement therapy have lengthened life expectancy for persons with hemophilia (PWH). These advancements have created a new hemophilia cohort of senior persons not seen since the previous human immunodeficiency viruses (HIV) years, and little is known about their age-related health outcomes.


We describe the impact of hemophilia on comorbidities, joint problems, healthcare utilization and health related quality of life (HRQoL) from the HUGS VII baseline data.


HUGS VII prospectively examines the cost and burden of hemophilia, including HRQoL, arthropathy, and economic impact in persons with hemophilia A or B age ≥ 40 years who obtained care from three US Hemophilia Treatment Centers. Participants completed a standardized interview to collect clinical and sociodemographic characteristics, hemophilia treatment regimen, pain, joint problems, comorbidities, and HRQoL using EQ-5D-3L. Clinical chart reviews documented hemophilic severity and treatment. Participants’ characteristics were compared between two age groups: 40-49 years and ≥ 50 years using Chi-square tests for categorical variables and T-tests for continuous variables.


This analysis includes a total of 70 male with hemophilia, 64.3% aged ≥50 years, 75.7% with hemophilia A. Individuals ≥ 50 years had higher rates of being married or with a partner (71.11% vs. 56.0%, P=0.20), retired/not employed (66.7% vs. 28.0%, P=0.002), and having mild or moderate hemophilia (68.9% vs. 40.0%, P=0.02) than those 40-49 years old. Use of prophylaxis was similar among age groups in severe hemophilia but lower for older mild/moderate PWH. Among persons with mild/moderate hemophilia, those ≥ 50 years old reported a higher rate of joint pain (83.8% vs 70.0%, P=0.37) or range of motion limitation (73.3% vs, 60.0%, p=0.45) than the younger group, although the differences were not statistically significant. Compared to those 40-49 years old, individuals ≥ 50 years old reported fewer emergency room visits (4.6% vs. 20.8%, P=0.03), and physical therapy visits (16.0% vs. 41.7%, P=0.06). The older age group had significantly higher rates of self-reported myocardial infarction (11.6% vs. 0%, P=0.08) and diabetes (24.4% vs. 4.0%, P=0.03) than those 40-49 years. Self-reported comorbidities were measured by asking “Has a doctor ever told you that you have certain conditions?” The most frequently reported comorbidities were hepatitis C infection (75.7%, 79.3% of persons with infected hepatitis C had been treated and, 82.7% cleared the hepatitis C virus), hypertension (47.1%), depression (23.2%) and anxiety (21.7%). Mean covariates adjusted EQ-5D index score was lower in older persons (0.79 vs. 0.87, P=0.09).


Older PWH are over-represented by individuals with mild/moderate disease, potentially due to premature death among those with severe disease. Although this group included a larger proportion of mild disease than younger PWH, it presented prevalent comorbidities both of aging and of hemophilic arthropathy, despite lower rates of healthcare utilization and use of preventive therapies.

Disclosures: Curtis: USC Hemophilia Utilization Group Study (HUGS): Consultancy; Patient Reported Outcomes, Burdens and Experiences: Consultancy; Bayer: Consultancy; Novo Nordisk: Consultancy. Konkle: Pfizer: Consultancy, Research Funding; Roche: Consultancy; BioMarin: Consultancy; Sigilon: Consultancy, Research Funding; Sanofi: Consultancy, Research Funding; Takeda: Research Funding; Uniquire: Research Funding; CSL Behring: Consultancy; Baxalta: Research Funding; Spark: Consultancy, Research Funding. Kulkarni: Sanofi/ Bioverativ, Bayer, Biomarin, Shire/Takeda, Novo Nordisk, Freeline: Other: clinical trial research grants ; Bioverativ/Sanofi, BPL, Genentech, Kedrion, Novo Nordisk, Octapharma, Pfizer, Takeda, Catalyst Bioscience Bayer: Membership on an entity's Board of Directors or advisory committees. Wu: Baxalta US Inc., Bannockburn, IL (a Takeda Company), CSL Behring L.L.C., and Octapharma USA, Inc.: Research Funding. Tran: Takeda: Consultancy; Novo Nordisk: Consultancy; Bayer: Consultancy; Bioverativ: Consultancy. Nichol: Global Blood Therapeutics: Research Funding; CSL Behring: Research Funding; Octapharma: Research Funding; Genentech Inc.: Research Funding; Baxalta US Inc., Bannockburn, IL (a Takeda Company): Research Funding; Pfizer: Research Funding.

*signifies non-member of ASH