The growing burden of long COVID in the United Kingdom: Insights from the UK Coronavirus Infection Survey 2022 Gokani et al

[Andy]

INTRODUCTION

“Long COVID” is defined as symptoms that persist 12 weeks beyond the acute phase of the coronavirus-2019 (COVID-19) infection and is estimated to affect 3.0% to 11.7% of the UK population. Symptoms include headache, myalgia, fatigue, and loss of taste and smell.1 Parosmia can persist for months after initial infection2 alongside brain fog and memory loss.3

The UK Office for National Statistics (ONS) Coronavirus Infection Survey (CIS) measures the number of people in England, Wales, Northern Ireland, and Scotland who test positive for a COVID-19 to provide national data to help government decision-making and inform the public and media. The aim of this study was to report the prevalence of ear-nose-throat (ENT)-related symptoms of long COVID and the population groups at greatest risk of long COVID from the CIS.

Open access, https://onlinelibrary.wiley.com/doi/10.1002/alr.23103

 

[Hutan]

I think it's time the UK Office for National Statistics got a bit more sophisticated. It should be referring to post-Covid-19 effects, or post-acute Covid-19 symptoms, or something like that, because it is reporting the prevalence of a range of post-acute illness effects.

Participants who identified themselves as suffering from long COVID were asked about the presence of 23 individual symptoms and the impact of long COVID on their day-to-day activities.6 Self-reported long COVID was defined as symptoms persisting for >4 weeks after the first suspected coronavirus infection but not explained by another condition.

There is a lot of scope for people to be confused about whether they are suffering from Long Covid with that definition. Should someone suffering lung damage from being on a ventilator label themselves with Long Covid? Only 50% of the people self-reporting that they have Long Covid report having fatigue.

The impacts on society of altered taste sensation versus ME/CFS are quite different, not to minimise the effect on quality of life of the former.

 

[CRG]

I think it's time the UK Office for National Statistics got a bit more sophisticated. It should be referring to post-Covid-19 effects, or post-acute Covid-19 symptoms, or something like that, because it is reporting the prevalence of a range of post-acute illness effects.

Agreed as a term long covid has outlasted its scientific usefulness - but there's problems when gathering data
Titles of the ONS source documents are:

Technical article: Updated estimates of the prevalence of post-acute symptoms among people with coronavirus (COVID-19) in the UK: 26 April 2020 to 1 August 2021

and

Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 6 May 2022

the first of those is from September 2021 and is concerned with how the ONS measures what is 'commonly referred to as "long COVID". ONS data includes that from public surveys so the terminology they use has to be meaningful to the average UKer.

the second ONS doc is based solely on "self-reported long COVID", with data gathered via Internet or phone, the survey protocol: pdf = https://www.ndm.ox.ac.uk/files/coronavirus/covid-19-infection-survey/protocolv21-120220925.pdf and as there is as yet no medically agreed terminology and the only common term in public use is Long Covid, this is what the ONS is using - the survey question block (page 57-8 of the protocol):

"Do they think/know they have been infected by COVID-19? Yes/No

• If yes, date first symptoms and what symptoms (yes/no for each of fever (including high temperature), muscle ache (myalgia), fatigue, sore throat, cough, shortness of breath (dyspnea), chest pain, headache, nausea/vomiting, abdominal pain, diarrhoea, loss oftaste, loss of smell, trouble sleeping, loss of appetite/eating less than usual, runnynose/sneezing, noisy breathing (wheezing), chest pain, palpitations, vertigo/dizziness,memory loss/confusion, difficulty concentrating, worry/anxiety, low mood/not enjoying anything, other symptoms)

• If yes, did they contact the NHS about this (suspected) COVID-19 infection? Yes/No
• If yes, were they tested? Yes/No
• If tested, were they positive/negative/test failed/results not yet received?
• If yes, were they hospitalised Yes/No?
• If yes, do they think that they are suffering from “long COVID” and with what symptoms?"

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It's by no means ideal but I don't know what the answer would be.

 

[Kitty]

I've been part of the survey since April 2020, and the questions have been thorough but simple throughout. As @CRG says, they have to be straightforward in order to make the survey accessible to as many people as possible. The power of surveys like this come from the number and range of people enabled to take part.

Asking questions using more sophisticated language doesn't necessarily yield more accurate answers; if you want to find out how many are suffering the after-effects of Covid, it's probably best to ask that. There are too many possibilities to break it down further without adding confusion or putting people off taking part. English is my first language, I read well, I have a reliable computer and internet connection, and it still takes a good 10 minutes to log on and get through the survey every month. If I were busy, it wouldn't take much more complexity to persuade me it wasn't worth the faff.

People are also asked questions about their employment status, and whether they are suffering from a long term condition that affects their ability to carry out daily living a lot, a little, or not at all. There will be people like me who've always given the same answer since Day 1, and others whose answers have changed. This will give some further insight, especially if they started answering differently around the time they said they developed long Covid.

Much of the survey is actually about tracking changes in behaviour. How many people of different age groups we've interacted with in the last seven days, how often, and whether it involved physical contact or just being in the same room; how many people have spent at least an hour in our homes, and how many other people's homes we've visited for at least an hour; how many times we've been to hospitals, care homes, shops, and leisure venues; whether we wore masks, and if so in what contexts; etc.

 

[John Mac]

Merged thread

UEA article

THIRD OF LONG COVID PATIENTS SUFFER PERSISTENT SMELL LOSS

Smell loss is one of the most prevalent symptoms of long Covid according to a new study from the University of East Anglia.

New research published today reveals that almost a third of long Covid patients suffer persistent smell loss, with almost a fifth experiencing loss of taste.

The team say that Christmas in particular can be a difficult time for people who have lost their sense of smell and taste – who will be missing out smells like the Christmas tree and mulled wine, or being able to taste their Christmas dinner, mince pies and chocolates.

The research team investigated the prevalence of long Covid, and particularly ear, nose and throat related symptoms such as smell loss and parosmia - where people experience strange and often unpleasant smell distortions.

Lead researcher Prof Carl Philpott, from UEA’s Norwich Medical School, said: “Long Covid is a complex condition that develops during or after having covid, and it is classified as such when symptoms continue for more than 12 weeks.

“Symptoms include headache, myalgia, fatigue and loss of taste and smell. Parosmia can persist for months after initial infection, alongside brain fog and memory loss.

“We wanted to find out more about the prevalence of long Covid, and particularly ear, nose and throat related symptoms such as smell loss and parosmia.”

The team looked at results from the UK Coronavirus Infection Survey and analysed information from over 360,000 people in March 2022.

A total of 10,431 participants identified as suffering from long Covid, and were asked about the presence of 23 individual symptoms and the impact of the condition on their day-to-day activities.

https://www.uea.ac.uk/news/-/article/third-of-long-covid-patients-suffer-persistent-smell-loss