- Meet Consumers/Patients
|Research: HPEN Quality of Life Study|
HPN Quality of Life Study
The Oley Foundation for Home Parenteral and Enteral Nutrition has, for some time, recognized the importance of assessing the quality of life (QoL) of people living on these therapies. There are QoL studies done in the first year or two of therapy but none, that we are aware of, in people who have been on 5, 10 and 15 years or longer.
Quality of Life studies play a valuable role in the management of chronic medical conditions. They are designed to reveal how therapies like homePEN impact the lives of consumers. They help identify problems and target solutions. They influence the allocation of research funds and are increasingly used to shape the reimbursement policies of insurance providers. Quality of Life studies may also impact how Medicare, which sets the direction in bowel failure management, views small bowel transplant versus homePEN.
In the months and years to come, both the clinical community and the insurance community will make important choices about how homePEN is managed and how it is reimbursed. Our goal at Oley is to ensure that consumers have a voice in this process.
If you have been on homePEN therapy for 2 years or more, we hope you will participate in this effort. The survey will be mailed to Oley consumer members and can be downloaded from the Oley website (www.oley.org). Please encourage any long-term HPENer you know to get involved. For more information, contact Oley at (800) 776-6539.