Last month, Novo Nordisk reported results from the Hemophilia Experiences, Results and Opportunities (HERO) study, a comprehensive analysis of the experience of living with hemophilia. The findings were presented in a series of poster abstracts, one of which was accompanied by an oral presentation, at the National Hemophilia Foundation’s 64th Annual Meeting in Orlando, FL, November 8-10, 2012.
HERO examined the disorder’s effect on interpersonal relationships, careers, access to care and quality of life. It aims to improve outcomes in hemophilia by calling for and enabling enhanced psychosocial support based on increased understanding and awareness of the issues.
In the US, 189 adults with hemophilia and 190 parents of children with hemophilia participated in the quantitative arm of the HERO research. Highlights included:
· Interpersonal Relationships – Adults with hemophilia and parents of a child with the disorder report supportive relationships with partners, family and friends.
· Employment – Despite physical disability experienced by adults with hemophilia and the challenges of caring for a child with the disorder, the majority of both groups have overcome these barriers to maintain employment.
· Access to Care – The majority of adults with hemophilia and parents of a child with the disorder are satisfied with their medical care, but almost a quarter of the respondents report concerns about access to treatment due primarily to financial concerns. Nearly 25% of participants also have difficulty accessing comprehensive care due to the distance to their local hemophilia treatment center.
· Quality of Life – At the time of the assessment, 71% of adults with hemophilia reported experiencing moderate or extreme pain or discomfort; 92% reported that pain interfered with their daily life in the past month. Quality of life assessments were lower for older people (41+ years of age) with hemophilia, those with inhibitors, or those with joint complications.
“Despite living with a chronic disorder that is often associated with significant pain, the majority of study participants report strong relationships with family and friends, active employment, and satisfaction with their medical care,” said Diane Nugent, MD, Medical Director of Children's Hospital of Orange County's Hematology and Blood & Donor Services and Chief of its Specialists Division of Hematology. Nugent is an advisor to the HERO study. “While we’ve made numerous advances in our understanding of hemophilia, the HERO initiative helps us identify gaps in knowledge with much more comprehensive information straight from our patients and their caregivers.”
New Mobile App
Additionally, Novo Nordisk unveiled HemaGo ™, a mobile application (app) to track hemophilia treatment, bleeding episodes and life events. The app offers multiple profiles so that more than one family member can use it. It helps patients track multiple medications, and set reminders for treatment or doctor's appointments. HemaGo ™ can also be used to record factor usage and reason for infusion and the type, location and duration of bleeding events. Patients can record pain scores, including the impact of the bleeding episode on their participation in work or school.
Information from the HemaGo ™ syncs to Novo Nordisk’s “Changing Possibilities in Hemophilia” Web site (www.changingpossibilities-us.com), where individuals have access to comprehensive reporting features, including treatment logs, bleed logs and quality of life reports. The information can be shared with patients’ healthcare team, including their hemophilia treatment center and home healthcare company.
Novo Nordisk’s access is restricted to generic information in which the data has been stripped, or de-identified, so that the individual source cannot be identified. This is in accordance with Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules.
“For the first time, individuals can track virtually every aspect of living with a bleeding disorder, regardless of their medication or disorder,” said Eddie Williams, Corporate Vice President, Biopharmaceuticals. “Thanks to input from members in the hemophilia community, we've created a first in class offering that provides benefits to all hemophilia patients and healthcare professionals.”
Source: Novo Nordisk press releases dated November 7th and 27th, 2012