Today, people with Long Covid are living with health conditions that are more than one and a half times more common than those found in the general population. Is this acceptable and how should we respond?
We’ve been working with City University, University of Oxford and other collaborators to visualise Long Covid research for the wider research, medical and patient community.
The Centre for Healthcare Innovation Research (see our identity design work here)
The project started with a discussion around the challenges of visualising complex data, and led to a simple graphic that helps patients and researchers understand the range and prevalence of symptoms and conditions that have been identified globally in patients suffering from long Covid illness.
In order to highlight the breadth of the affected populations, we split the research data between people who have been hospitalised during the acute stage of Covid-19 and those who were able to remain at home. We then consulted with clinicians to categorise the symptoms into clusters that patients could understand and relate to.
In November 2020, we had data from 23 studies, covering over 6,500 people - with minor differences between patients who needed to go to hospital and those who coped with Covid at home. Hospitalised patients had 37 different symptoms while non-hospitalised people had 29, and the studies identified memory impairments, falls, reductions in quality of life as some of the differences between the two groups.
By March 2021, the team had collected data from 26 studies and over 7000 hospitalised patients and people in the community. The number of symptoms had increased from 37 to 56. New and disturbing health impacts included neuromuscular issues, additional neurocognitive effects and more cardiopulmonary and gastrointestinal problems.
The key message was that despite significantly fewer studies on people in the community, both cohorts experienced long covid symptoms with the most prevalent symptoms being weakness, general malaise, fatigue, concentration impairment and breathlessness. Differences between the groups were not significant.
The March 2021 study showed an increase in the number of symptoms but a reduction in the frequency, so that all of the ‘very common’ symptoms became less frequent. Why was this? A change in the study groups, changes in the underlying viral infection or changes to treatment?
Now, in August 2022, the team have been able to review data of published studies up to February 2022, across more than 87,000 people with a confirmed previous Covid-19 infection compared with a ‘control’ group of 120,000 people who had not had a confirmed Covid-19 diagnosis. This group included both hospitalised and non-hospitalised people and some who may have had more than one bout of infection. The data now includes longer follow ups and children.
This version of the review grouped symptoms into 10 symptomatic categories and identified 31 symptoms, with cardiovascular, cognitive and physical functioning signs and symptoms as the outcomes with highest increased risk. Overall, patients experiencing Long Covid had an average risk factor of 1.6:1 for these symptoms compared to the control group, rising to 2.5:1 for cardiovascular issues identified as chest pain and palpitations.
The question for society, our public health providers and our policy makers is obvious. Are these additional risks acceptable to society and how should we respond to the growing impact of ill health on individuals, their families and our future wellbeing?
