University of Alabama at Birmingham’s Division of Clinical Immunology and Rheumatology, has been approved for a $2.2 million award from the Patient-Centered Outcomes Research Institute to implement a computerized decision-aid process to help lupus patients make individualized and informed decisions about their treatment care and options.Jasvinder Singh, M.D., professor of medicine in the
“Lupus is a chronic, rare autoimmune disease that primarily affects young women, and treatment decisions for lupus are complex,” Singh said. “For many patients, lack of knowledge about lupus and their treatment options often interferes with their decision-making process, and our findings indicate that implementation of a computerized decision-aid system in clinics across the country may help these patients make better-informed decisions relating to their care, ultimately impacting their outcome with the disease.”
In a PCORI-funded, multicenter, randomized trial, Singh and his team found that, when patients were presented with a computerized decision aid versus a traditional pamphlet handout with treatment and disease information, the patients who used the lupus decision aid had a significant decrease in the uncertainty of their options as it related to choosing immunosuppressive drugs and were likely to pick treatment options that were most consistent with their values. The decision aid enabled the patient cohort to truly understand what the disease entails, what treatment options look like, what comorbidities occur as a result of lupus and more.
|“What’s great about the lupus decision aid is that it is culturally and linguistically appropriate for patients of all backgrounds, races, ages, literacy levels and socioeconomic statuses. This levels the playing field for patients who are trying to understand their diagnosis and options to the best of their abilities.”|
In the implementation of the decision-aid system, 16 recruitment sites will be considered. As the implementation approach is evaluated using an observational study design, Singh and his team will monitor and modify the implementation protocol, with adjustments in real time that hopefully impact the effectiveness of the resources at hand.
“What’s great about the lupus decision aid is that it is culturally and linguistically appropriate for patients of all backgrounds, races, ages, literacy levels and socioeconomic statuses. This levels the playing field for patients who are trying to understand their diagnosis and options to the best of their abilities,” Singh said. “We are hopeful that, in the implementation of this decision aid in different practice types across the country, we will in turn improve outcomes of patients with lupus and learn more about barriers that inhibit patients from receiving the treatment and care they need.”
The IDEAL study is part of a portfolio of projects that PCORI has funded to help improve the awareness, uptake and use of patient-centered comparative effectiveness research results obtained from PCORI-funded studies. Chosen through a highly competitive review process, applications were assessed for a variety of factors including the importance of the finding being implemented, the strength of the project plan, and the potential for the project to result in changes in practice and improvements in health care and health outcomes.
“PCORI is committed to making sure research findings from our studies are easily accessible and used in practice to improve patient’s health,” said Jean Slutsky, PCORI’s chief engagement and dissemination officer. “This project has received funding from PCORI to disseminate and implement its findings toward this goal.”