Comorbidities, Health-Related Quality of Life, Health-care Utilization in Older Persons with Hemophilia—Hematology Utilization Group Study Part VII (HUGS VII)

Abstract

Randall Curtis,1 Marilyn Manco-Johnson,2 Barbara A Konkle,3 Roshni Kulkarni,4 Joanne Wu,5 Judith R Baker,6 Megan Ullman,7 Duc Quang Tran Jr,8 Michael B Nichol5 1Factor VIII Computing, Berkeley, CA, USA; 2Hemophilia and Thrombosis Center, University of Colorado Anschutz Medical Campus, Aurora, CO, USA; 3Washington Center for Bleeding Disorders, BloodWorks Northwest and the University of Washington, Seattle, WA, USA; 4MSU Center of Bleeding and Clotting Disorders, Department Pediatrics and Human Development, Michigan State University, East Lansing, MI, USA; 5Sol Price School of Public Policy, University of Southern California, Los Angeles, CA, USA; 6Public Health Department, The Center for Comprehensive Care & Diagnosis of Inherited Blood Disorders, Orange, CA, USA; 7Department of Pediatrics, Gulf States Hemophilia & Thrombophilia Center, University of Texas Health Science Center at Houston, Houston, TX, USA; 8Department of Hematology and Medical Oncology, Hemophilia of Georgia Center for Bleeding & Clotting Disorders of Emory, Emory University School of Medicine, Atlanta, GA, USACorrespondence: Michael B Nichol, Sol Price School of Public Policy University of Southern California, 650 Childs Way, RGL 212, Los Angeles, CA, 90089, USA, Tel [phone], Fax [phone], Email [email protected]: We compare the impact of hemophilia on comorbidities, joint problems, health-related quality of life (HRQoL) and health-care utilization between two age groups: 40– 49 years and ≥ 50 years.Patients and Methods: The HUGS VII study recruited persons with hemophilia A or B age ≥ 40 years. Participants completed surveys to collect data on sociodemographic and clinical characteristics, hemophilia treatment regimen, pain, joint problems, comorbidities, HRQoL, depression and anxiety, at baseline and 6-months later. Clinical chart reviews documented hemophilic severity and treatment.Results: The sample includes 69 males, 65.2% aged ≥ 50 years, 75.4% with hemophilia A. Individuals ≥ 50 years were more likely to have mild or moderate hemophilia (68.9% vs 41.7%, P = 0.03) than those 40– 49 years old. Among persons with mild/moderate hemophilia, those ≥ 50 years old reported a higher rate of joint pain (83.9% vs 70.0%, P = 0.34 at baseline, 91.3% vs 57.1%, P = 0.06 at follow up) or range of motion limitation (73.3% vs 60.0%, P = 0.43 at baseline, 73.9% vs 28.6%, P = 0.04 at follow up) than the younger group. Compared to the younger group, the older group reported fewer emergency room visits (4.5% vs 21.7%, P = 0.03), and physical therapy visits (15.9% vs 43.5%, P = 0.01) at baseline. The sample depression rate was 85.7%, but the differences among the age groups were not significant. The mean covariate-adjusted EQ-5D index score was lower in older persons (0.77 vs 0.89, P = 0.02).Conclusion: Older persons with hemophilia in this sample 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 individuals with mild disease than the younger group, they experienced lower quality of life, more comorbidities both of aging and of hemophilic arthropathy, and lower rates of health-care utilization.Keywords: hemophilia A, hemophilia B, burden of hemophilia, aging in hemophilia

Keywords

• hemophilia a
• hemophilia b
• burden of hemophilia
• aging in hemophilia