Study collecting the views of young people, parents of children with long COVID, and doctors, finds that long COVID in children is poorly understood by doctors

Dr Katharine Looker

‘Enhancing the utilization of COVID-19 testing in schools’, is a study which will look at the characteristics of long COVID and COVID-19 infection in children. ‘Long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. The study is being funded as a result of a rapid funding call by Health Data Research UK (HDR UK), the Office for National Statistics (ONS) and UK Research and Innovation (UKRI). The study forms part of the larger Data and Connectivity National Core Study, which is led by HDR UK in partnership with ONS.

The COVID-19 testing in schools study is related to the CoMMinS (COVID-19 Mapping and Mitigation in Schools) study being undertaken by the University of Bristol in partnership with Bristol City Council, Public Health England [PHE] and Bristol schools. CoMMinS aims to give us an understanding of COVID-19 infection dynamics centred around school pupils and staff and onward transmission to family contacts, using regular testing. Our study will jointly analyse data from CoMMinS, along with information from Electronic Patient Records, and data from the COVID-19 Schools Infection Survey (SIS; jointly led by the London School of Hygiene & Tropical Medicine [LSHTM], PHE, and ONS). The SIS is a study similar to CoMMinS but carried out nationally.

To help inform research questions and methods for the study, members from the University of Bristol study team gathered views about long COVID in children between 9 March and 30 April 2021 from:

  • seven young people from the NIHR Bristol Biomedical Research Centre Young People’s Advisory Group (YPAG)
  • five families whose children have long COVID or suspected long COVID, recruited through two online UK campaign groups for long COVID, and
  • a survey completed by four GPs and one paediatrician, and an online meeting with two paediatricians.

It is important to note that the opinions gathered were based on small samples which may not be representative.

Through the meeting and survey with the doctors, the study team found that clinical understanding of long COVID in children is currently very limited.

The doctors said that it may be hard to distinguish between long COVID and other conditions with similar symptoms. Many of the symptoms of long COVID, like fatigue and feeling sick, aren’t very specific, and are common to many different conditions. Long COVID in children currently lacks a clinical definition, making diagnosis difficult. It isn’t yet properly understood whether long COVID is a new condition in itself, or a group of conditions like post viral fatigue, which is already recognised.

Young people, and families of children with long COVID or suspected long COVID, who were also asked for their opinion, said that feeling sick or stomach pain, extreme tiredness, and headaches were the symptoms they would rank as most ‘harmful’. For young people, this was based on them imagining having the symptoms. For the families, this was based on their first-hand experience.

The families also said that the symptoms their children were experiencing were numerous, often very severe, and more wide-ranging than those currently listed on the NHS website for long COVID. It is not yet clear what is causing the unusual symptoms.

The families said that they had struggled to get a diagnosis and treatment for their children. They also said that long COVID symptoms were having a significant impact on their children’s day-to-day lives both physically and psychologically, and that some of the children had missed school because of the symptoms. Some of the families also found fevers difficult to manage because their children had to miss school to self-isolate every time they had a fever. They wanted to know why the set of symptoms were being experienced, and why their children in particular had developed them.

It is not known how many children have or will develop long COVID. So far, studies which have tried to measure the rate of long COVID in children suggest it is rare. However, quantifying the number of cases is made difficult by a lack of clinical understanding of long COVID including the lack of an agreed clinical definition. The opinions collected suggest that relying on clinical diagnoses alone will under-estimate cases. On the other hand, there needs to be a cautious approach to estimating the number of cases based on non-specific symptoms, as other conditions which cause similar symptoms may be counted as well.

Caroline Relton, Professor of Epigenetic Epidemiology and Director of the Bristol Population Health Science Institute at the University of Bristol, joint lead for CoMMinS and one of the lead authors of the report, said: “The opinions we gathered further highlight that it is difficult to count the number of children with long COVID on the basis of diagnoses alone while long COVID in children remains poorly defined.

“There are added complications of studying long COVID in children, when it is sometimes difficult to disentangle what might be the result of experiencing infection from what might result from the wider impact of experiencing the pandemic. Isolation, school closures, disrupted education and other influences on family life could all have health consequences. Defining the extent of the problem in children and the root causes will be essential to helping provide the right treatment and to aid the recovery of young people who are suffering.”

The findings highlight that examining GP and hospital visits, and school attendance, might currently be a more useful and feasible way of assessing how COVID-19 has affected children, rather than relying only on diagnoses of long COVID. However, the study researchers also need to be aware how often healthcare is accessed according to need, and absence from school due to self-isolation, which will affect what is being measured.

Feeling sick or stomach pain, extreme tiredness, and headaches will be important symptoms to consider in the study.

Read the full report

Find the full report on the CoMMinS study news page.

 

COVID19 – should schools close early for Christmas?

Sarah Lewis, Marcus Munafo and George Davey Smith

 

 

We have previously written about the limited risk posed to pupils, teachers and the community by schools being open during the Covid19 pandemic. Schools have now been open for almost a full academic term (3 months), so it is time to take another look at the evidence. (more…)

Are schools in the COVID-19 era safe?

Sarah Lewis, Marcus Munafo and George Davey Smith

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The COVID-19 pandemic caused by the SARS-COV2 virus in 2020 has so far resulted in a heavy death toll and caused unprecedented disruption worldwide. Many countries have opted for drastic measures and even full lockdowns of all but essential services to slow the spread of disease and to stop health care systems becoming overwhelmed. However, whilst lockdowns happened fast and were well adhered to in most countries, coming out of lockdown is proving to be more challenging. Policymakers have been trying to balance relaxing restriction measures with keeping virus transmission low. One of the most controversial aspects has been when and how to reopen schools. (more…)

Are teachers at high risk of death from Covid19?

Sarah Lewis, George Davey Smith and Marcus Munafo

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Due to the SARS-CoV-2 pandemic schools across the United Kingdom were closed to all but a small minority of pupils (children of keyworkers and vulnerable children) on the 20th March 2020, with some schools reporting as few as 5 pupils currently attending. The UK government have now issued guidance that primary schools in England should start to accept pupils back from the 1st June 2020 with a staggered return, starting with reception, year 1 and year 6. (more…)

How might fathers influence the health of their offspring?

Dr Gemma Sharp, Senior Lecturer in Molecular Epidemiology

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A novel thing about the Exploring Prenatal influences On Childhood Health (EPoCH) study is that we’re not just focusing on maternal influences on offspring health, we’re looking at paternal influences as well.

One of the reasons that most other studies have focused on maternal factors is that it’s perhaps easier to see how mothers might have an effect on their child’s health. After all, the fetus develops inside the mother’s body for nine months and often continues to be supported by her breastmilk throughout infancy. However, in a new paper from me and Debbie Lawlor published in the journal Diabetologia, we explain that there are lots of ways that fathers might affect their child’s health as well, and appreciating this could have really important implications. The paper focuses on obesity and type two diabetes, but the points we make are relevant to other health traits and diseases as well.

The EPOCH study will look at how much paternal factors actually causally affect children’s health. Image by StockSnap from Pixabay

How could fathers influence the health of their children?

These are the main mechanisms we discuss in the paper:

  • Through paternal DNA. A father contributes around half of their child’s DNA, so it’s easy to see how a father’s genetic risk of disease can be transmitted across generations. Furthermore, a father’s environment and behaviour (e.g. smoking) could damage sperm and cause genetic mutations in sperm DNA, which could be passed on to his child.
  • Through “epigenetic” effects in sperm. The term “epigenetics” refers to molecular changes that affect how the body interprets DNA, without any changes occurring to the DNA sequence itself. Some evidence suggests that a father’s environment and lifestyle can cause epigenetic changes in his sperm, that could then be passed on to his child. These epigenetic changes might influence the child’s health and risk of disease.
  • Through a paternal influence on the child after birth. There are lots of ways a father can influence their child’s environment, which can in turn affect the child’s health. This includes things like how often the father looks after the child, his parenting style, his activity levels, what he feeds the child, etc.
  • Through a father’s influence on the child’s mother. During pregnancy, a father can influence a mother’s environment and physiology through things like causing her stress or giving her emotional support. This might have an effect on the fetus developing in her womb. After the birth of the child, a father might influence the type and level of child care a mother is able to provide, which could have a knock-on effect on child health.
There are lots of ways in which fathers might influence the health of their offspring. This figure was originally published in our paper in Diabetologia (rdcu.be/bPCBa).

What does this mean for public health, clinical practice and society?

Appreciating the role of fathers means that fathers could be given advice and support to help improve offspring health, and their own. Currently hardly any advice is offered to fathers-to-be, so this would be an important step forward. Understanding the role of fathers would also help challenge assumptions that mothers are the most important causal factor shaping their children’s health. This could help lessen the blame sometimes placed on mothers for the ill health of the next generation.

What’s the current evidence like?

In the paper, we reviewed all the current literature we could find on paternal effects on offspring risk of obesity and type 2 diabetes. We found that, although there have been about 116 studies, this is far less than the number of studies looking at maternal effects. Also, a lot of these studies just show correlations between paternal factors and offspring health (and correlation does not equal causation!).

What is needed now is a concerted effort to find out how much paternal factors actually causally affect offspring health. This is exactly what EPoCH is trying to do, so watch this space!

This content was reposted with permission from the EPOCH blog.

Depression: where we’re at and where we’re going

To mark Mental Health Awareness Week, IEU PhD researcher Alex Kwong takes us on a tour of the research on depression in young people.

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What is depression and why should we care?

Depression is one of the biggest public health challenges we’re currently facing and is expected to be the highest global burden of disease by 2030. The world health organisation (WHO) estimates that around 300 million people worldwide currently experience depression and that at least one in five people will experience depression at some stage of their life. Treatment is not always successful with only around 40-60% of individuals responding positively to antidepressant medication, and other forms of treatment such as cognitive behavioural therapy (CBT) or other talking based therapies requiring long waiting times of up to two years. It’s no surprise to see that depression and other mental health treatments are considered to be in a ‘crisis’ as we continually look for new and effective ways to combat this disease.

Research suggests that depression may first begin to manifest early in adolescence and young adulthood. This may have serious downstream consequences as depression during adolescence is related to both concurrent and later self-harm and suicide, corresponding mental health problems (like anxiety, addiction and psychosis) and impaired social functioning (reduced cognitive functioning and reclusiveness), to name a few. It also appears that depression during adolescence and young adulthood may actually be getting worse. Now whether or not this is because young people are talking more about their mental health than before remains to be seen, but that has not stopped researchers identifying potential causes for depression in adolescence in the hope of developing new and effective treatments and interventions. The message seems to be clear: by stopping/reducing depression in young people, we can potentially improve the quality of life later on.

What is responsible for depression in young people?

The lived experience of depression between young people differs from one person to the next, meaning there is no ‘one-size-fits-all’ approach. But with the help of research, we have begun to identify things that individuals experiencing depression have in common, that could be useful for treating and even preventing depression in young people. What follows is a whistle stop tour of some of the findings of potential causes of depression in young people.

Bullying

It may seem obvious, but childhood and adolescent bullying is one of the strongest predictors of current and later depression. One recent study found that individuals who had been bullied during adolescence were almost 3 times more likely to be depressed at age of 18. Bullying is particular prevalent during school years but can also occur well into the workplace or later education, which can have lasting effects on an individual’s mental health. Stopping bullying from occurring will be difficult, but that does not mean we cannot support individuals who have been bullied in order to help prevent depression from occurring or getting more severe.

Parental Depression

A lot of research has focused on the role of parental mood and later depression in young people. The role of parenting cannot be understated as numerous studies have shown that children of depressed parents are more likely to go on to have depression themselves, see research by Pearson et al, Stein et al and Gutierrez-Galve et al. However, it’s not clear if this is passed on genetically from the parent to child, or if there is something in the “environment” that transmits depression from parent to child. Whilst we don’t know for sure, the answer looks like it could be a bit of both. Parents may pass on depression genetically to their children, but depressed parents may also create an environment that makes the child more liable to depression. It is even possible that the parent passes on their genetics and the child then creates an environment for themselves that makes them more liable to depression. This is a form of gene-environment correlation that I won’t discuss in detail, but research is beginning to tease this apart with regard to parent and childhood depression.

Genetics

Interest in the genetics of depression has been heightened in the last few years. We always knew from twin studies that depression was likely to be heritable (i.e., that depression can be passed on from generation to generation), but convincing some that depression could have a strong genetic basis was tough (for a really good debate on this involving Professor Marcus Munafò, you can listen to this episode of BBC Start the Week). Most recently it has been shown that common genetic variants associated with depression in adulthood seem to predict greater levels of depression in children and adolescents, as well as varying patterns of depressive mood across adolescence. Importantly, it’s clear that there is no ‘one gene’ for depression. Instead, there are multiple genes which can be referred to as ‘polygenicity’ or ‘polygenic risk scores’; “poly” meaning multiple and “risk” indicating that individuals carrying multiple risk genes are more liable or ‘at risk’ to depression. By using polygenic risk scores we can begin to identify individuals experiencing depression early by using knowledge of their genetic make-up. However, it is really important to state here that genetic liability to depression does not equal genetic determinism. Just because someone is more genetically liable to depression, does not mean they will get depressed. There are multiple other factors at play, and we do not know how genetic liability to depression impacts on other pathways (i.e., does having genetic liability make you more likely to seek out an environment that could leave you more depressed?); but many researchers are beginning to ask these questions.

Taken together, these findings highlight how diverse depression is and how many factors could underlie depression in adolescence. There are a ton of other factors that have been related to adolescent depression that I have not had time/space to talk about. That is not to say they are not important, because most likely some are. As research develops and we are able to utilise different methods, we will get a better picture of what underpins depression in adolescence and what can be done to prevent and treat it.

What can we do?

Well for one, we have to keep up the research. We don’t know nearly enough about the underlying mechanisms and pathways that truly underlie adolescent depression. Researchers are beginning to examine this further with novel and promising techniques, but we also have to streamline the time it takes for research to be put into practise. The prolific mental health blog “The Mental Elf” states that it takes 17 years for research to reach clinical practise. That’s a long time and means a lot of people could miss out on the treatment they deserve.

Secondly, we have to be more forthright in how we talk about depression. You may have heard the expression ‘it is ok to be not be ok”. Avoiding telling people to “man-up” when they’re feeling depressed, speaking out and campaigns will only drive this forward. We have to normalise the fact that depression is a disease and like any other disease, it is good to talk about it. Only by talking about depression can we really move forward to end the stigma that being depressed is some kind of weakness. In fact one of my favourite instances of this recently was well explained by the England international Danny Rose.

Where do we go from here?

We appear to be reaching a turning point where more and more people are discussing mental health issues. This may be celebrities, royals or just your average Jo from down the street. But what is important is that we recognise the problem. That depression is a global burden that may be getting worse and requires our utmost attention and action. We are beginning to understand the causes of depression and how we might tackle it through research and reducing the social stigma that surrounds depression. However, the question is whether or not we can take advantage of these changes to really make a difference. Can we build on the progress we have made to finally one day beat depression? Yes. I really believe we can.

Resources for if you’re feeling down

If you’re ever feeling low, then I cannot speak highly enough for these guys: https://www.samaritans.org/

There are a lot of charities who specialise in mental health and depression who provide some excellent resources and information:
https://www.mqmentalhealth.org/
https://www.mind.org.uk/

There are some awesome twitter feeds out there who I have always found to be really helpful and supportive of mental health issues. These people really get depression and are leading the charge in one way or another so do please give them a follow:

MENtalHealth
Paul McGregor
Gareth Griffith
Miguel Cordero Vega
Louise Arseneault
Dr Erin C Dunn

 

 

It’s the mother! Is there a strong scientific rationale for studying pregnant mothers so intensively?

Dr Gemma Sharp, University of Bristol 

For many years, researchers have been studying how our early life experiences, including those that happen before we are born, can affect our lifelong health. In an article we wrote last year, Debbie Lawlor (University of Bristol), Sarah Richardson (Harvard University) and I show that most of these studies have focused on the characteristics and behaviours of mothers around the time of pregnancy. In a recent paper published in the Journal of Developmental Origins of Health and Disease, Debbie Lawlor, Sarah Richardson, Laura Schellhas and I show that there have been more studies of maternal prenatal influences on offspring health than any other factors (read more here).

We argue this is because people assume that mothers, through their connection to the developing fetus in the womb, are the single most important factor in shaping a child’s health. This assumption runs deep and is reinforced at every level, from researchers, to research funders, to journalists, to policy makers, to health care professionals and the general public  (see figure 1).

In our article, we question the truth behind this assumption.

Is there a strong scientific rationale for studying pregnant mothers so intensively?

Well, no actually. Although a lot of studies have found correlations between maternal characteristics and offspring health, the evidence that these characteristics actually have a causal effect is pretty weak. And since there haven’t been many studies of the effects of fathers and other factors, it’s difficult to say how important any maternal effect might be compared to any other early life experience.

Focusing so intensively on pregnant mothers, and interpreting all evidence as causal (if a mother does X, their unborn child will have Y), can have very damaging effects. Complex, nuanced scientific findings are being rushed into simplified advice that, although well-meaning, places the burden of blame on individual pregnant women. For example, there has been very little research on the effects of low-level drinking during pregnancy, but the current advice in the United States is for all sexually active women of reproductive age to avoid alcohol completely if they are not using birth control, for fear of fetal harm.

Fig. 1 Assumptions that the health, lifestyle and behaviours of mothers around the time of pregnancy have the largest causal influence on their children’s health and risk of disease drives research at all stages, from study design to research translation, and is also reinforced by research itself.

A culture of blame

The culture of blame is more overt in the media, where articles are often guilty of scaremongering. This feeds into public beliefs about how pregnant women should and shouldn’t behave, which can limit pregnant women’s freedom and even lead to questions around whether their behaviour is criminal. For example, pregnant women have reportedly been refused alcoholic drinks in bars, and taking drugs during pregnancy is legally classed as child abuse in many US states.

In our article, we make a number of recommendations that we hope will create more of a balance. In particular, we call for more research on how child health might be influenced by fathers and other factors, including the social conditions and inequalities that influence health behaviours. We also call for greater attention to be paid to how health advice to pregnant women is constructed and conveyed, with clear communication of the supporting scientific evidence to allow individuals to form their own opinions.

The EPoCH study

In June, I’ll begin work on a new project to investigate how both mothers and fathers’ lifestyles might causally affect the health of their children. Funded by the Medical Research Council, the EPoCH (Exploring Prenatal influences on Childhood Health) study will highlight whether attempts to improve child health are best targeted at mothers, fathers or both parents. I’m excited to work closely with the people behind WRISK to help ensure that findings from this project are communicated effectively and responsibly.

I hope that, along with the rest of the research community, we can produce high quality evidence to support health care and advice that maximises the health of all family members and stops blaming women for the ill health of the next generation.

The original article can be accessed (open access) here, and the authors’ full list of recommendations can be found below.

Full recommendations

Our full recommendations, which apply variously to researchers, journalists, policy makers and clinicians:

  • Collect more and better quality data on partners of pregnant women.
  • In addition to studying the effects of mothers, study and compare the effects of partners/fathers, social and other factors on child health.
  • Look for causal relationships between these factors and child health, not just (potentially spurious) correlations.
  • Publish all results, including negative results, to give a balanced view of the evidence.
  • Be aware and critical of the current imbalance in the scientific literature and how this will bias our overall understanding of the truth.
  • Collaborate with social scientists to consider the social implications of this research and the role of cognitive bias and social assumptions when interpreting findings.
  • When communicating findings, put the risk in context: compare findings to the broader scientific literature and the social environment.
  • Avoid language that suggests individual mothers are responsible for direct harm to their foetuses (most of the evidence will be based on averages in a population and can’t be assumed to apply to all individuals).
  • Where there is evidence of a paternal effect, aim public health advice at both parents.
  • Explain the level of risk in a way that empowers people to assess the evidence and form their own opinions (i.e. avoid over simplification).

This blog post is an edited version of one originally posted on the WRISK project website.