Is anyone collecting data on how many of those that “survive” are permanently injured?

Question: Well this opinion in the NY Times, “Our Next Crisis Will Be Caring for Survivors of Covid-19”, is really depressing. And my 9/11 health friend has been pointing this out to me for weeks — that survival doesn’t mean “all better”. Is anyone collecting data on how many of those that “survive” are permanently injured?

Answer: So true; Survival doesn’t mean “all better.” Over the last month or two, there have been more and more news reports on this issue, especially the issue of long-term challenges experienced by patients coming off of ventilators and out of the ICU. This review article, recently published in Science of the Total Environment (a journal I was not previously familiar with), discusses the need for longitudinal cohort studies to understand the needs of COVID-19 survivors. It also offers a helpful visualization of the ways in which COVID infection could have long-term physical ramifications (Figure 1). Meanwhile, guidance published by the UK’s National Health Service last week, “After-care needs of in-patients recovering from COVID-19”, provides the best synthesis I’ve seen of the ongoing issues and needs of patients who survive COVID-19. For example, the guidance notes that post-intensive care syndrome (PICS), “an amalgamation of persistent physical, cognitive and psychological impairments, [has been found to] present in 56% of patients at 12 months following prolonged ventilation.” Check out the guidance for more evidence-informed detail!

Finally, I think you’ll be heartened to know that there are a number of longitudinal cohort studies being planned and currently recruiting study participants to understand long-term effects of COVID among people who recover. Here are a few longitudinal cohort studies in the works:

  • A Longitudinal Study of COVID-19 Sequelae and Immunity: NIH-planned study that will begin recruitment this month with the aim of enrolling 900 participants who have recovered from COVID-19 to “characterize the clinical sequelae of acute infection, characterize the immune response to the virus, and follow the evolution of the immune response over time and determine the extent to which natural immunity is protective against re-infection.”
  • Longitudinal COVID-19 Cohort Study: University of Vermont and Johns Hopkins Univeristy-planned study that began recruitment last month with the aim of enrolling 225 participants with COVID-19 to “longitudinally follow survivors for 12 months, to investigate short-term and longer-term inflammatory/immunologic and clinical outcomes during this pandemic.”
  • Quality of Life and Physical Performance After Novel Coronavirus Infection: Kantonsspital Winterthur (Switzerland)-planned study that began recruitment last month with the aim of enrolling 60 participants with COVID-19 to “observe the long-term health-related quality of life (HRQOL) and physical performance in individuals hospitalized due to a COVID-19 infection.”
  • Mapping Organ Health Following COVID-19 Disease Due to SARS-CoV-2 Infection: Mayo Clinic (UK) and Gemini (UK)-planned study that just began recruitment with the aim of enrolling 507 participants with COVID-19 who are recovered or recovering to “measure the prevalence of organ volume changes and damage in lungs, heart, kidney, liver, pancreas, spleen as assessed by MRI among those having recovered, or recovering”
  • Longitudinal Population-based Observational Study of COVID-19 in the UK Population: Queen Mary University of London-led study that should be in the recruitment phase now with the aim of enrolling 12,000 participants who are UK residents age 16+ to “1. Determine risk factors for incident COVID-19 and for adverse outcomes of COVID-19 in the UK population; 2. Characterise the natural history of COVID-19 in the UK population; 3. Evaluate the impact of COVID-19 on the physical and mental health of the UK population; 4. Provide a resource from which to identify potential participants for future clinical trials, and to use data collected as comparison or control data for trial participants who have been randomised to receive one or more interventions.”

Figure 1. Potential Biological Impacts of COVID-19 (image from this paper)

Image for post