World Sepsis Day, held on September 13th every year, is an opportunity for people worldwide to unite in the fight against sepsis. Sepsis is responsible for 1 in every 5 deaths worldwide, and is considered to be the number one preventable cause of death. Sepsis-survivors often suffer ongoing mental and physical effects, half of which may have a long-term condition called post-sepsis syndrome, the risk being higher among people admitted to an intensive care unit (ICU).

On World Sepsis Day 2021, the University of British Columbia's Action on Sepsis Research Excellence Cluster, BC Sepsis Network, and the Centre for International Child Health hosted an hour-long discussion on post-sepsis care in a virtual session entitled, “Bridging the Gaps in Post-Sepsis Care for Sepsis Survivors." The panel featured viewpoints from sepsis survivors and health providers from BC and Uganda, focusing on barriers to obtaining care, and solutions to improving care. Colin O'Neill, Leader of Health System Improvement at the BC Patient Safety & Quality Council, moderated the panel.

What are the challenges?

Kristin MacDonald, member of the Action on Sepsis Patient Advisory Council, opened by recalling her sepsis experience. Her routine surgery to have a gall bladder removed led to sepsis and a 21-day ICU stay in a medically-induced coma. “Once out of the coma, I found myself in the position to have to walk again, navigate disorientation and dizziness, relearn how to urinate after weeks of catherization, and try to swallow without choking. These are all things we take for granted." Even after 5 years, Kristin still faced ongoing exhaustion, bone and joint pain, digestive problems, unexplained fevers, and neuropathy.​

​“When I got out of the hospital in 2016, I felt like there was so little information out there on post-sepsis care. Even having a flyer on what to expect coming home out of the hospital after having sepsis would have helped," said MacDonald. 

Jaclyn Robinson, Clinical Nurse Specialist with the Post-COVID-19 Interdisciplinary Clinical Care Network, relayed her story as a COVID-19 and sepsis survivor. In early 2020, she became  one of the first COVID-19 patients admitted to in Vancouver General Hospital. Transferred to ICU and placed on a ventilator, Jaclyn remained in hospital for 7 days before being discharged. “That's when the physical and mental recovery started. As I arrived home, I found myself so short of breath, I had significant weakness, couldn't walk, I had severe chest pains, my mental cognition was not there, and I was disoriented with no memory." After following up with her family physician 3 days later, she realized that at that time no one knew what to do with post-COVID patients.

Dr. John Boyd drew on his clinical experience as an ICU physician at St. Paul's Hospital. “In the last 10-15 years we've improved sepsis survival by 50%. That's amazing. We've focused on the acute illness, which is great because you need to survive to get to the next phase. But the after-effects of infection, and all the life support measures like intubations, the drugs used to tolerate intubation, losing muscle mass, psychological sequelae, a lot of impacts from the disease itself and what you have to do to survive it," said Dr. Boyd.

How can the health system support post-sepsis care?​

Clare Komugisha, a nurse and Research Supervisor at Walimu in Uganda, discussed the Smart Discharges Program – an initiative that aims to improve outcomes for children following treatment for sepsis in low-resource settings. The Program uses risk prediction to identify children who are most vulnerable to post-discharge death, so that these children receive referrals follow-up visits at local health facilities. In addition, health workers provide caregivers with counselling on health-seeking and healthy behaviours during the post-discharge period.

​“We have empowered health workers with the knowledge to understand the post-discharge period. Before, they did not take into account the post-discharge period and what happens after this. With this approach, they are able to appreciate why it is important to follow up with the child, as post-discharge mortality is equal to or greater than in-hospital mortality in Uganda," said Komugisha. 

In BC, Dr. Nardia Strydom, Department Head of Family Medicine at Vancouver Coastal Health and Providence Health Care, led the development of the post-COVID care guidelines during the start of the pandemic. “We called the first 100 patients who had been discharged from the hospital [post-COVID] and were overwhelmed with what we heard from patients about their needs…They needed emotional support, physical support, and long-term support. We worked at how we can increase knowledge in the community equitably – anyone should have access to the resources."

 Key takeaways:

“It's important to prepare patients for when they go back home. They don't know what their recovery pathway may look like, how long it will take them, what to expect, and to inform their families on how to treat the patients and help them recover," said Komugisha. Robinson remarked, “What we need now is a soft care handover from acute to community care, way before the discharge summary... This information needs to be accessible and equitable. The Post-COVID-19 Interdisciplinary Clinical Care Network is providing patient facing education all in multiple languages, and multiple modalities."

“The challenge in BC is figuring out the best layering for health care. ICU and the acute phase are already good, the next layer (transition to generalist care) we have de-emphasized." To address gaps in post-sepsis care, Dr. Boyd has plans to open an ICU and sepsis survivorship clinic. “COVID has spurred an interest in sepsis – there are a lot of new treatments only available in clinical trials. Luckily, our sepsis group in Vancouver is very developed and we get access to these trials. We can provide access to these new treatments", stated Dr. Boyd.

This World Sepsis Day, the Province of British Columbia recognized the critical importance of this global  health issue in an official proclamation highlighting BC Sepsis Network's clinical leadership and quality improvement support for sepsis care, and the BC Sepsis Network and Action on Sepsis's continued work to increase sepsis knowledge and public awareness. Our aim: draw on the lessons from this panel to catalyze future clinical and research initiatives so that these efforts lead to improved care for sepsis patients through their entire journey, from hospitalization and throughout the post-discharge period.

Watch the recording of the session here.