Developing and Disseminating Strategies to Build Sustainable Lupus Awareness, Knowledge, Skills, and Partnerships

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Lupus is a systemic autoimmune disease. It is estimated 161,000 to 322,000 Americans have the most common type of lupus, systemic lupus erythematosus (SLE). Although anyone can get lupus, 9 out of 10 diagnoses of lupus are in women ages 15 to 44. African American and Latino women are at greater risk for lupus than white women and usually get it at a younger age and have more severe symptoms. Lupus is also more common in Hispanic, Asian, and Native American and Alaskan Native women. The causes of lupus are unknown but are believed to be linked to genetic, environmental, and hormonal factors.Lupus is difficult to diagnose, hard to live with and challenging to treat. Lupus has a range of symptoms often confused with other conditions, making it difficult to recognize and diagnose. Its symptoms and outcomes can be severe or fatal, its onset can be sudden, its causes are unclear and there is no known cure.This NOFO addresses several persisting gaps and inequities related to lupus. Lupus can result in a range of negative outcomes including disability, social stigma, lost productivity, absence from the workforce, reduction in quality of life, organ damage or failure or early death. Undiagnosed or late diagnosis of lupus can increase the likelihood or worsen the severity of many of these outcomes. Even with a correct diagnosis, lupus is challenging to treat. Much is needed to improve the care and quality of life for people living with the disease. The public health sector can contribute a great deal to this end and help mitigate these gaps and inequities.The purpose of the NOFO is to support national organizations implementing national efforts to help reduce time to lupus diagnoses, increase number of people with lupus getting needed care and ongoing treatment, improve lupus care, care transition and care coordination, improve lupus patients’ self-management behaviors, and improve quality of life and health outcomes among people with lupus. This NOFO will focus on two key strategies and their associated activities:Strategy A: Increase awareness, knowledge and skills among healthcare providers to appropriately recognize the signs and symptoms of lupus, what to do if lupus is suspected, and provide quality, well-coordinated lupus care. Activities are to:Develop and promote healthcare provider lupus training and education.Increase the role of technology in the clinical setting.Collaborate with health professional associations to establish or increase sustainable educational opportunities.Develop and promote practice procedures for transition of lupus care from pediatric to adult care.Strategy B: In collaboration with key stakeholders promote the national uptake and use of effective lupus self-management tools and/or services. Activities are to:Raise awareness about lupus signs and symptoms and what to do if you have lupus among targeted populations using existing national lupus campaigns, websites, and tools.Support implementation and evaluation of lupus-specific self-management tools and/or services.Promote the national uptake and use of lupus self-management tools and/or services among women ages 15 to 44 and key stakeholders.Apply electronic health or medical record systems or other medical information technology to refer patients to appropriate lupus self-management tools/services, and track patient information.Identify and address lupus patients’ barriers to access effective lupus self-management tools and/or services.These strategies and activities are intended to result in the following outcomes:Increased number of healthcare providers recognizing the signs and symptoms of lupus and what to do if lupus is suspected.Increased number of healthcare providers using tele-health and/or electronic health records to identify lupus cases and treatment gaps.Increased number of settings receiving guidance on transition of pediatric lupus care to adult care.Increased number of people living with lupus engaged in the use of lupus self-management tools and/or services.Increased number of referrals to lupus self-management tools and/or services using electronic health or medical record systems or other medical information technology.Improved self-management behaviors among people with lupus.The NOFO will fund TWO awards, ONE award will be issued for each Strategy. Applicant can apply for one or both Strategies but must submit a separate application for each Strategy. A total of $3,500,000 is available for annual funding, a range of $1.4 Million to $1.8 Million will be awarded to each successful applicant.