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

Abstract

Purpose

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

Acknowledgments

The study was supported by Pfizer through an Investigator-Initiated Research agreement between Pfizer and the University of Southern California (USC).

The members of the study group: University of Southern California: Michael B. Nichol, PhD, Principal Investigator (PI), Joanne Wu, MS, Steven Carrasco, MPH; University of Colorado Denver Hemophilia and Thrombosis Center: Marilyn Manco-Johnson, MD, Site PI, Hana Durkee, Lindsey Furton; BloodWorks Northwest, Seattle, WA: Barbara Konkle, MD, Site PI, Sarah Galdzicka, Sarah Ruuska, Rachel Hervey; Michigan State University Center for Bleeding and Clotting Disorders, East Lansing, MI: Roshni Kulkarni, MD, Site PI, Anna Robinson, Kathleen Anderson.

Disclosure

Randall Curtis received a consultant fee from USC through the project funding provided by Pfizer. He also received consultant fee from Bayer, Patient Outcomes Research Group and Novo Nordisk. Marilyn Manco-Johnson reports grants from HRSA/MCHB. Barbara A. Konkle, MD, has received grant funding from Pfizer, Regeneron, Spark, Sangamo, Sanofi, Sigilon, Takeda and Uniqure and has received consulting fees from BioMarin, CSL Behring, Pfizer and Sigilon. Roshni Kulkarni, 1) Advisory boards: Bioverativ/Sanofi, BPL, Genentech, Kedrion, Novo Nordisk, Octapharma, Pfizer, Takeda, Catalyst Bioscience Bayer; 2) Clinical Trials: Sanofi/Bioverativ, Bayer, Biomarin, Shire/Takeda, Novo Nordisk, Freeline; 3) Speakers bureau, stocks or shares: none. Joanne Wu received financial support through the project funding provided by Pfizer. Judith Baker, Megan Ullman have no significant conflicts of interest to declare. Duc Quang Tran Jr received consultant fees from Bayer, Bioverativ, HEMA Biologics, UniQure, Novo Nordisk, and Takeda. Michael B. Nichol is the principal investigator for the HUGS research group and has received grant funding from multiple sources including Pfizer, Genentech Inc., Shire (formerly Takeda/Baxter), Octapharma, CSL Behring, and Global Blood Therapeutics. The authors report no other conflicts of interest in this work.