We must measure the impacts of long covid by establishing patient registers, says Nisreen Alwan

I got covid-19 symptoms back in March 2020, so I am a “first-waver.” I was not ill enough to go to hospital. In fact, I was not severely ill at all, but my symptoms kept fluctuating and relapsing over the following nine months. Some disappeared, new ones appeared, and some stayed the same. I have caring responsibilities and not knowing what this is and how it will end has been very distressing. 

However, I am one of the lucky ones. There are so many people who had, and continue to have, much more severe symptoms. I was also fortunate in that I was able to adapt certain aspects of my life and continue to function effectively most of the time by avoiding, as much as possible, activities and situations that trigger my symptoms. Many cannot afford to do so.

It is very important to point out that I am only one. My story may be different in many ways from thousands of other people living with long covid. That is why the name “long covid” is still the most appropriate one. It is an umbrella term that does not assume knowledge other than the knowledge that the illness is long, and that some people are not fully recovering for many weeks or months following covid-19 infection.

It is likely that there are multiple underlying mechanisms at play in people with long covid. What we do know is that it is not uncommon. The Office of National Statistics in the UK estimates that one in five people continue to experience symptoms for five weeks or longer after a positive covid test, and one in ten people for 12 weeks or longer. The breakdown by age shows that at five weeks from a positive covid-19 test, around one in four of those aged 25-69 are symptomatic. In children, the estimates are around one in seven for those aged 12-16 years, and around one in eight for those under 12. 

Covid-19 leads to severe morbidity and organ damage in some people. NHS data analysis of 47,780 hospitalised patients with covid-19 (with 43,035 non-ICU patients) shows that within a few months of discharge, 29% got re-admitted to hospital, and 12% died. They had higher rates of heart, liver, kidney disease, and diabetes, compared to matched controls not diagnosed with covid19. 

Applying the basic principles of public health, there are three levels of prevention with regards to long covid:

Primary prevention: this is preventing people getting covid-19 in the first place. For that we need effective public health measures to control the spread of the virus aiming towards elimination. This also means telling people about the real risk of getting long covid even if they are younger and healthy so that they make informed decisions about their behaviour in relation to limiting their risk of infection as much as possible. This requires clear messaging to the public. We still do not know who is more vulnerable to developing long covid. 

Secondary prevention: this is preventing acute covid-19 infection from progressing to long covid. We still not know how to do this, and we urgently need research to tell us what early interventions are effective even in non-hospitalised patients.

Tertiary prevention: this is treating people with long covid to prevent complications and disability, as well as improve their quality of life. That only happens if the condition is properly recognised and everyone with it is given thorough physical assessment and appropriate medical investigations to detect possible organ damage and treatable pathology. It also requires research to identify the risk factors for progression of disease.

The All-Party Group (APPG Coronavirus) demanded three things in the first Parliamentary debate on long covid in January 2021: reporting, recognition, and research. Recognition must include employment rights, financial support, sick pay, and compensation if exposure to the virus was occupational. Certain occupations such as health, care, and key workers are at much higher risk of exposure and subsequently getting long covid, therefore they need adequate protection including personal protective equipment. This will help to break the vicious cycle of inequalities where disadvantaged people and lower-paid high-exposure occupations have worse outcomes from covid-19.

Reporting means counting long covid. This is critically important. “We cannot fight what we do not measure,” I wrote in my first BMJ piece on this. So how do we measure long covid? One way is by establishing patient registers. For that we need universal and inclusive clinical diagnostic criteria not entirely dependent on lab-confirmation. This needs proper coding in electronic health systems. This helps to avoid a “postcode lottery” due to variation in diagnosis. We also need to follow-up those with acute covid-19 and those who test positive to assess their recovery, using existing testing and tracing infrastructures. This could be done simply through mobile phone technologies.

We need to have illness statistics informing our pandemic response and research priorities not only deaths, hospital admissions, and positive tests statistics. These could include:

1. Proportion of people not recovered within 4, 8 and 12 weeks among those infected
2. Proportion of people with complications and organ damage following covid19 infection
3. Proportion re-admitted to hospital following discharge
4. Proportion off work due to long covid and/or covid19 complications 
5. Proportion recovered from long covid

Let us hope that the final point on that list will be high if we do the right things to tackle the devastating morbidity effects of this virus.

Nisreen A Alwan is an associate professor in Public Health at the University of Southampton and an Honorary Consultant of Public Health at University Hospital Southampton NHS Foundation Trust. @Dr2NisreenAlwan 

Competing interests: None declared