PROVIDENCE – Pro-Change Behavior Systems Inc. has won a grant from the Lupus Foundation of America to help develop an online self-management program for people recently diagnosed with lupus.
The foundation is currently in the third year of a five-year cooperative agreement with the Centers for Disease Control and Prevention to develop the tool, said Deborah Levesque, chief science officer at Pro-Change. Levesque would not disclose the amount of the grant.
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Systemic lupus erythematosus is an autoimmune disease in which the immune system produces antibodies to cells in the body, leading to widespread inflammation and tissue damage, Levesque said. Lupus patients experience periods of illness and “remission,” but there is no cure.
The disease can affect joints, skin, the brain, lungs, kidneys and blood vessels. People with lupus may experience fatigue, pain or swelling in joints, skin rashes and fevers. Lupus can occur at any age, but primarily affects young women between the ages of 15 and 44, Levesque said. Women are affected by the disease nine times more than men and many minorities are affected at higher rates than whites.
Lupus is a difficult disease to treat, Levesque said, because its symptoms and effects can manifest differently from person to person. “It’s a really complicated and challenging disease,” she said.
Pro-Change will finish the formative work for content development for the online program. The formative work will build upon prior self-management research, including a literature review, focus groups and interviews with health care providers and people with lupus.
The program will focus on the top three or four strategies that evidence shows will have the biggest impact on patients’ health and functional status. The five-year project will end with program development, pilot testing and eventual distribution through the Lupus Foundation of America’s National Resource Center on Lupus.
Pro-Change has four tasks in the project:
- Conduct a landscape assessment to review and synthesize prior research to assess the strengths and weaknesses and gaps in existing lupus self-management programs.
- Build off secondary research to identify top needs and recommendations for the self-management strategies that should be considered for inclusion in the new self-management program for individuals recently diagnosed with lupus.
- Conduct a limited number of additional in-depth interviews with providers, and interview and survey individuals with lupus to fill in any gaps in knowledge that remain.
- Issue top recommendations for self-management strategies to be included in the new self-management program.
Levesque said she and her colleagues hope to offer a much-needed guide that will help people with lupus determine the best strategies for managing the disease.
“We’re really excited about this work,” she said.
Rob Borkowski is a PBN staff writer. Email him at Borkowski@PBN.com.
