Survivors of critical illness syndromes such as sepsis and ARDS are at high-risk for long-term consequences such as continuing incremental mortality, weakness, depression, and post-traumatic stress disorder. Many of these begin in the hospital and persist for months or years after discharge from the hospital. Given these long-term consequences for patients who present with these life threatening illnesses and injuries, it is especially important that we involve both patients and their families in exploring and determining what they believe are the most important clinical outcomes for both the patients and their families.
Jonathan Sevransky, MD; Greg Martin, MD; and Mike Lava, MD, have developed collaborations to conduct quantitative and qualitative projects to determine the clinical outcomes that are important to critically ill patients. Initial studies have been conducted in conjunction with several patient advocacy groups, surveying both survivors of sepsis and acute respiratory distress syndrome (ARDS), as well as family members of patients who have died with those diseases, to learn more about survivors and family members understanding and beliefs about their care and clinical outcomes. This study will further examine similarities and differences across different clinical syndromes, as well as between important subgroups of patients and their families. Future goals include the development of clinical trials in patients with sepsis and ARDS that include patient and family determined clinical outcomes, in order to ensure that we are both studying and delivering patient-centered care.