There's a new group listed on LinkedIn titled Post Intensive Care Syndrome. Here is a link to view and join this group: https://www.linkedin.com/groups/12658739 Our group's first goal is to spread the news about our group, and to recruit as many members as possible. We're excited at the prospect of having a large community of post intensive care syndrome LinkedIn group members for a number of reasons: To provide educational resources to former ICU patients, their caregivers & families, the medical community, and the public. To share our belief that everyone in the medical community that provides direct care to people in the ICU, and that is involved in the aftercare of former ICU patients, plays an important role in the process of educating themselves, their peers and their patients about PICS symptoms. To provide education to everyone about the fact that PICS is a major health crisis. To recruit new group members to help educate group members. To encourage former ICU patients and their family members, with LinkedIn accounts, to join this group. ​ With the support of a growing group membership, we hope to position ourselves as a group with clout necessary to "get a seat at the table with decision-makers" at critical care organizations, hospitals, and health insurance companies. Should we be fortunate enough to get a "seat at the table," we hope to position ourselves to solicit advice from this group to share with decision makers about about commonsense solutions to help solved this complex but solvable medical, financial, sociological, problem. Our group also hopes to plans to enhance our existing library of articles, research, locations of PICS treatments centers, and other materials and information about the PICS. We'll ask group members to help us collect materials from PICS researchers, ICU physicians & nurses and others detailing the PICS symptoms to be aware of, availability of PICS clinical in your area and other treatment options. We'll also ask members to help us fashion surveys for our membership on a multitude of topics to find out what our majority finds to be the most important avenues for us to pursue together. If you'd like to participate in the leadership of this group or as an Admin, please drop us a message, at your convenience. Thank you!

Every year, more than 6 million patients are discharged from intensive care units (ICUs) in the United States (U.S.). At least one-third and as many as 80% experience a range of physical, cognitive and mental impairments associated with post-intensive care syndrome (PICS). Many of these patients still need care years after leaving the ICU. These numbers suggest that millions of people are currently afflicted with PICS, many with long term consequences. Moreover, thousands of survivors of the COVID-19 pandemic are facing symptoms similar to PICS long after their “recoveries” are thought to be complete. Given its pervasiveness and severity, what is the medical profession doing to identify, understand and treat PICS? PostICU.org has been tracking medical research journals to answer this question. For several years, we have been searching a number of on-line databases of peer-reviewed medical journals worldwide to find relevant articles. One of these, PubMed, has proven to be a particularly accessible database for the nonprofessional investigator. Founded in 1996, PubMed is a free resource supporting the search and retrieval of biomedical and life sciences literature. PubMed is maintained by the U.S. National Institutes of Health (NIH). Its database contains more than 30 million peer-reviewed journal citations. The full text of roughly one-quarter of these articles are open access publications available to the public at no charge. In 2012, less than two years after the seminal Society of Critical Care Medicine meeting that first defined PICS, the first four articles appeared in the PubMed database,. Since then, PICS has become a steady and now rapidly growing focus of medical research. This is shown in the following graph. A small handful of medical journal articles about PICS were published over the years from 2012 to 2015, after which the numbers began to shoot up dramatically. New PICS articles added to the PubMed database jumped from five in 2015 to 23 in 2016. In the last four years, the annual total has nearly quadrupled to an estimated 90 articles in 2020. In total, the PubMed database included 209 PICS articles as of November 1, 2020. Over 40% have been published in the last year. Most of the early articles tried to quantify the number of post-ICU patients afflicted with PICS and the distribution of various physical, mental and cognitive impairments among them. Many also focused on the expansion of protocols used by ICU nurses to include new and enhanced procedures to reduce delirium, enhance mobility and avoid other likely precursors of PICS. As the PICS knowledge base expanded, the medical community began to propose and test specific strategies to treat PICS patients in randomized controlled trials.These include establishment of post-ICU recovery centers specifically designed to help PICS patients.Other strategies include creating a network of peer support groups, including on-line groups, where PICS sufferers can talk freely among themselves.Another idea encourages ICU patients to maintain a diary of their experiences, worries and fears, with contributions by their families and ICU nurses, and continuing during post-discharge recovery.These topics will be examined more closely in future Jim’s Blogs.

The Society of Critical Care Medicine (SCCM) did a lot of the heavy lifting in designating post-intensive care syndrome (PICS) as a distinct medical condition. This makes sense. Every PICS sufferer was once critically ill and treated in a hospital intensive care unit (ICU). SCCM continued to lead after the 2010 inaugural PICS meeting, helping to build a place for PICS in the medical hierarchy. Early work was done by three task forces established during the initial meeting. They met periodically and presented reports at the Second PICS Stakeholders Meeting, also organized by SCCM, and held on September 24 and 25, 2012. After the presentations by the three task groups, attendees incorporated their respective recommendations into a single PICS Action Plan to guide future work. By then, the Awareness and Education Task Group had already published an information brochure and several videos on PICS. It had established an internet site about PICS called MyICUcare.com and it inserted a PICS definition into Wikipedia’s encyclopedia. With input from ICU survivors with PICS, an earlier SCCM brochure on leaving the ICU was modified to include a checklist of questions to identify when symptoms should be reported for follow-up medical care. Given that patients themselves may be unable to process complex information at their ICU discharge, the brochure was designed as much to help family members as the patients themselves. The Barriers Task Group recommended promoting the concept of “functional reconciliation,” making formal comparisons of a patient’s functional capabilities before hospitalization with their post-ICU status. This new concept included a checklist of physical, cognitive and mental health conditions and included case managers to ease transition of care and referral to appropriate care providers. Topics studied by the Research Task Group included partnering with other national organizations working on PICS, such as the Critical Care Societies Collaborative and the National Institutes of Health (NIH). The group also recommended seeking funding sources, including NIH institutes, the Agency for Healthcare Research and Quality, the Patient Centered Outcomes Research Institute, and various foundations. The Research Task Group also identified topics where further evidence was required to support a sound understanding of patient recovery from PICS. The group urged future research strategies to include a patient-centered focus, and include long-term outcome measures into studies. Development of datasets of patient-level data would benefit both research and practice evaluations, it concluded. At the second meeting in 2012, the number of stakeholder groups grew to 25, from 15 in 2010, and the total number of attendees expanded from 31 to 40. Like the early meeting, most attendees were medical professionals. Importantly, two ICU survivors with PICS were invited to attend the second meeting as patient advocates. This was one of the first and, unfortunately, still rare inclusions of PICS patients in medical decisionmaking. A fuller discussion of the SCCM Second Stakeholders Conference on PICS appears in an article published in Critical Care Medicine in December 2014 entitled “Exploring the Scope of Post-Intensive Care Syndrome Therapy and Care: Engagement of Non-Critical Care Providers and Survivors in a Second Stakeholders Meeting.”The article is included in the PostICU library on this website.

In late September 2010, a two-day meeting was held in Chicago, Illinois, to discuss the long-term consequences of extended intensive care unit (ICU) hospital stays after critical illnesses. The meeting was convened by the Society of Critical Care Medicine (SCCM), a leading international trade organization currently representing 16,000 physicians and nurses. In attendance were 31 medical specialists from 15 stakeholder groups invited by the SCCM. No post-ICU patients were included. During the meeting, the stakeholders approved a new medical term, post-intensive care syndrome (PICS), to describe “new or worsening problems in physical, cognitive or mental health status arising after a critical illness and persisting beyond acute care hospitalization.” This diagnostic term was created to help doctors determine what is “wrong” with patients who survive critical illness, but don’t recover as fully as expected. PICS itself was not invented at the Chicago meeting, of course. Patients who “didn’t make it all the way back” from severe medical crises were known for decades, but their symptoms were commonly ignored or even ridiculed. In the face of decades of stunning medical advances in saving lives, this collateral damage may have seemed a reasonable price to pay. No more. The SCCM 2010 meeting launched a feverous quest to learn more about the factors contributing to the emergence of PICS, to enhance knowledge of the full range of impairments affecting the quality of life of its sufferers, and to develop treatment protocols to promote recovery, if not a cure. PICS sufferers are now recognized by the medical community as needing and worthy of help with the health problems they endure, but did not create. This recognition may be just in time to help in the post-COVID era, where thousands of survivors of the virus are already experiencing persistent impairments. These unfortunates are termed “long haulers,” but their symptoms seem consistent with those of PICS. Hopefully, the decade of work so far to counter PICS, will help jump-start rapid development of treatments for COVID long haulers. The events in Chicago were reported in a March 2012 medical journal article, “Improving Long Term Outcomes after Discharge from Intensive Care: Report from a Stakeholders' Conference.” The article was co-authored by a long list of doctors led Dale M. Needham from Johns Hopkins University in Baltimore. It was published in Critical Care Medicine and is included in the PostICU library on this website.