Building Capacity for Polymyalgia Rheumatica Education and Awareness - BACKGROUND Polymyalgia rheumatica (PMR) is a painful inflammatory condition, occurring primarily after age 50 and affecting 800,000 people in the US. Considering documented high rates of misdiagnosis and underdiagnosis, prevalence may be higher. PMR causes a high degree of disability for the individual and requires long-term treatment with glucocorticoids, with consequent risk for serious adverse effects of treatment. People with PMR are at high risk for giant cell arteritis (GCA), a systemic vasculitis that can cause sudden, irreversible blindness and increases the risk of stroke, aneurysm, blood clots, and death. The body of research on PMR is small compared with similar conditions, supporting the need for more work to understand the condition. Diagnosis is clinical and often difficult because symptoms overlap with other conditions and the disease is heterogeneous. Although the erythrocyte sedimentation rate (ESR) is often elevated, this is neither a sensitive nor specific biomarker. Diagnostic criteria are lacking. Adjunctive treatment to reduce glucocorticoid use is available but underutilized. Data on overall disability, such as disability-adjusted life years (DALYs) from PMR are lacking as are data on the costs and consequences of the disease to individuals and society as a whole. In short, the paucity of research, difficult diagnosis, and under-treatment of PMR all support a great and urgent need to increase awareness and education about PMR. APPROACH To understand how best to increase awareness of and education for PMR, we propose starting with a baseline assessment of the available data. This assessment will include 1) reports of data in electronic health records from large practice networks and claims databases; 2) an assessment of data in state and national government public health databases; and 3) a survey of public health professionals’ awareness of PMR. We will use that baseline assessment as a benchmark for evaluating and measuring the success of subsequent activities in this project. The baseline assessment will also serve as a starting point for identifying and prioritizing data gaps to fill. For this purpose, we will convene expert panels of PMR patients/care partners, healthcare professionals and researchers, and other health system invested parties. We will use both a Donabedian and Culturally-Informed Engagement framework to ensure panels include health disparities in the evaluation and prioritization of data gaps. Working from the identified priorities, we will develop tools that can be used by healthcare providers and patients to increase the number of public health data available on PMR. We will also create educational opportunities and activities to increase public and professional awareness of PMR and promote the use of the developed tools. MEASUREMENT AND OUTCOMES We will measure the number of public health professionals who are aware of the public health surveillance data and evidence-based strategies for PMR, increasing the number of national and state indicator reports disseminated to public health professionals, and identifying what data gaps exist. Using a citizen-scientist approach, we will increase the number of people who are aware of information relating to the diagnosis and treatment by developing and disseminating tools to improve the assessment and surveillance of PMR. We will also increase awareness of PMR by developing and disseminating educational opportunities, both for the public and for healthcare professionals. The developed tools and education can increase the capacity to drive awareness of PMR and also to increase the amount of public health knowledge available on PMR. This in turn can have an almost immediate impact on improving treatment by reducing the cumulative corticosteroid dose used to treat PMR. It can also drive increased research and long-term improvement in diagnosis, treatment, and health outcomes, including several HealthyPeople 2030 indicators.
