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

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Lupus is a prototypical autoimmune disease. There are several forms of lupus. Systemic lupus erythematous (SLE) is the most common and serious form of lupus and has a variety of clinical manifestations. SLE affects from 320,000 to 1.5 million Americans and has strong disparities in incidence and prevalence, affecting women far more than men, minorities more than whites and younger as opposed to older adults. The causes of lupus, including SLE, are unknown but are believed to be linked to genetic, environmental, and hormonal factors. Lupus is difficult to diagnose, hard to live with and a challenge to treat. Lupus has been referred to as a “cruel mystery” because it is hidden from view of many individuals and providers, has a range of symptoms often confused with other conditions, hits out of nowhere, and has no known cause and no known cure. Undiagnosed or a late diagnosis of lupus can result in a range of negative outcomes, including disability, stigma, lost productivity, reduction in quality of life, organ damage or organ failure and early death. Even with a correct diagnosis, lupus is a challenge to treat and manage due to lack of awareness and understanding of signs and symptoms of lupus, and limited clinical and community resources for the treatment, support, and self-management of lupus and related co-morbidities. While we have seen improved care for individuals with lupus, we still have much work to do 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. The purpose of the supplemental funds is to expand on the development and dissemination of resources to build sustainable lupus awareness, knowledge, skills among healthcare providers and people with lupus, and partnerships supported under the CDC-RFA-DP15-1511 cooperative agreement. These activities can help address lupus challenges addressed above. The recipients under this supplement will expand on the scope of work performed in the previous project period- 9/30/2019 to 9/29/2020 under CDC-RFA-DP15-151105 CONT19. Specifically, recipients will expand on objectives and activities related to the following project goals: GOAL 1: Raise awareness among individuals and Health Care Professionals (HCPs) of 1) lupus signs and symptoms and 2) what to do if lupus is suspected. GOAL 2: Increase availability of lupus resources for people with lupus and Health Care Professionals to help with lupus diagnoses and care management. GOAL 3: Raise awareness among individuals and Health Care Professionals of available resources that can be used by people with lupus to help them with their disease management. GOAL 4: Increase engagement of national, state or local partnerships to help achieve and sustain Goals 1-3. This supplement will result in the following outcomes: 1) raised awareness about lupus among high risk populations, 2) increased resources and strategies to improve knowledge and skills held by healthcare providers and patients about understanding signs and symptoms of lupus and what to do after lupus diagnoses, 3) improved lupus care management knowledge and skills among healthcare providers and patients, and 4) increased number of partnerships to help sustain accomplishments made under this cooperative agreement.

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