LFA-REAL System to Improve Health and Quality of Life
Currently, there are no adequate measures or tools designed to quickly and easily help a doctor and patient work together to evaluate lupus disease activity and make informed treatment decisions. This has serious implications for the care of people with lupus; moreover, the changing face of healthcare delivery makes the situation even more complex. The LFA-REAL™ (Rapid Evaluation of Activity in Lupus) system is being developed as a first-of-its-kind set of tools to monitor lupus disease activity, addressing both the needs and concerns of clinicians and people with lupus.
What is LFA-REAL™?
The LFA-REAL™ system is a two part system, based on a series of simple questions and observations, to determine a treatment’s impact on the patient’s health and daily life. One set of questions and observations, known as a Clinician Reported Outcome measure (ClinRO), is designed for clinicians and the other set of questions, known as a Patient Reported Outcome measure (PRO) is designed for patients. Once approved for clinical use, the LFA-REAL™ system will enable healthcare providers to make evidence based and targeted treatment decisions, allowing for overall as well as organ specific disease assessment. It will be designed so that it’s easy to access, using web and mobile applications. Measurement systems like LFA-REAL™ are commonly used for other diseases, but do not exist for lupus. The system is currently in the research and design phase of development.
Potential Benefits of the LFA-REAL System
The Lupus Foundation of America is developing the LFA-REAL™ system in collaboration with a multi-stakeholder group including top lupus experts, doctors, researchers, drug development companies, agencies of the federal government, people with lupus and health insurers. The system will be designed to:
- Provide cost-effective and efficient clinical methods to evaluate disease activity in patients with lupus so clinicians can use the most targeted treatments.
- Show treatment effectiveness and measure improvement in clinical studies, speeding development, evaluation and approval of new and better treatments.
- Reduce unnecessary treatments and administrative costs.
- Provide critical information that supports insurance coverage of new treatments.
- A preliminary study was done to determine how well a draft version of the clinician tool compares to other lupus disease activity measures. The results were very positive and published online at Lupus Science & Medicine™.
- A second study was completed where a revised version of the clinician tool was tested in 4 different sites. The results are very promising and will be highlighted at this year’s American College of Rheumatology (ACR) Annual Meeting in November.
- Qualitative research including focus groups and in-depth interviews were completed in 6 cities to lay out the conceptual framework for the patient tool. Findings were presented last year at the ACR Annual meeting.
- Recruitment for the patient advisory council is wrapping up soon. Patient partners will ensure that every step of the LFA-REAL™ system development is meaningful and relevant to people with lupus.
Updated November 5, 2015