This project addresses one of the pressing issues of ICU medicine—the post-ICU patient. An increasing body of research has documented the deficits faced by survivors of intensive care, specifically neuro-cognitive dysfunction, depression, anxiety and post-traumatic stress disorder, ICU-acquired muscle weakness, and chronic pain. These long-lasting disabilities present an important and prevalent public health concern. Although clinicians are increasingly aware of the challenges that face ICU survivors, they do not frequently discuss this with patients or their families. As a result, patients often face a bewildering number of care transitions—from hospitals to long-term care to nursing facilities—after critical illness, without a roadmap or community. Furthermore, there is little research that specifically investigates what outcomes are important to ICU survivors and their families, or how best to communicate these outcomes to improve decision making.
In Tier I, we will develop a local advisory board of ICU survivors, family members, and clinicians, who will work together to create a comprehensive online resource for ICU survivors and their families. In addition to a layperson-friendly look at what to expect after the ICU, the website will include a moderated conversation board, a repository of survivor stories, and an online space for survivors and caregivers to detail what research questions and outcomes they consider important. Moving forward, we will work with this community to prioritize research questions while developing an infrastructure for research in Tier II. Ultimately, in Tier III we will develop a rigorous scientific proposal with strong patient engagement.