Every year in the United States, more than 1 million people are diagnosed with sepsis, and more than 250,000 people die of it. Sepsis can affect anyone of any age, socioeconomic status, or ethnic origin. Yet fewer than half of Americans have heard the word “sepsis,” and it continues to go underdiagnosed in hospitals. Clinician researchers’ and patients’ personal experiences with sepsis motivated our group to create the Sepsis Survivors Engagement Project—the first step in further understanding and improving the life experiences and health outcomes for the millions of survivors.
In Tier I, we developed a partnership of sepsis survivors, stakeholders, and researchers. Collectively, we developed communication tools to gather survivors’ experiences during their hospital stays and to assess their quality of life post-sepsis. Our Facebook page, Sepsis Survivors Engagement Project, has more than 800 “likes.” We collaborated with Sepsis Alliance, the UK Sepsis Trust, Sepsis Aware, Global Sepsis Alliance, and World Sepsis Day in launching the Life after Sepsis Survey (www.tinyurl.com/lifeaftersepsis), which, to date, boasts more than 650 sepsis survivor participants.
For Tier II, we will further build capacity toward designing a comparative effectiveness research study for post-sepsis syndrome. We will solidify our governance structure and communication plan, continue recruitment to our Life after Sepsis survey, and increase our knowledge in the comparative effectiveness research methodology in order to develop a specific research proposal on post-sepsis syndrome (Tier III). Our ultimate goal is to define interventions that will improve the survivorship for patients living with the consequences of sepsis.