In a press release issued last week, Novo Nordisk discussed results from 2 studies detailing the impact of hemophilia on patients living with the condition, and on those who care for them. Findings included a high prevalence of pain among hemophilia sufferers, and significant emotional stress and concern over financial burden experienced by caregivers. The results provide insights into the quality of life associated with hemophilia and add to the body of knowledge uncovered in the company's Hemophilia Experiences, Results, and Opportunities (HERO) study, the largest-ever multinational, comprehensive study that aimed to increase understanding of psychosocial issues impacting people with hemophilia.
Results from a pilot test of the "HEMOphilia associated CAregiver Burden" scale (HEMOCAB™) found that among the domains surveyed, emotional stress, financial burden, perception of child, and impact on the caregivers themselves were reported to be the most burdensome. The findings cite 74% of caregivers frequently feeling afraid that their child might get injured when they are not around to provide help. Findings from initial analyses of the Pain, Functional Impairment and Quality of Life (P-FiQ) study confirmed the high prevalence of pain in adults with hemophilia, with the majority of participants (85.2%) having reported they experienced acute and/or chronic (persistent) pain over the past 6 months. Data demonstrated pain and functional impairment were ubiquitous and impacted patients' daily activities, especially mobility and quality of life. David Cooper, MD, Senior Director, Medical Affairs, Novo Nordisk observed "These wide-ranging data uncover the tremendous burden hemophilia has on both patients and caregivers and reinforces the importance of an individualized treatment approach for this chronic disease."
Read the press release on the findings from the HEMOCAB pilot test, here.