Long Covid is a new condition and Long Covid research is being published at speed. It can be difficult keeping up to date with research and we often rely on newspapers and other media to share the findings more widely. Some of these sources share the information in a way that is designed to evidence a specific agenda.
Long Covid Kids have Expert Champions that we look to for accurate analysis of research. You can be certain that our Data Analyst and Champions report accurate and unbiased information that you can trust, however if this is an area you would like to know more about this blog outlines 10 Questions to Ask when Reading About Long Covid Research.
What is the date of publication?
Research papers used to take years after the research was completed to be published, although, more recently, publishing findings happens much quicker than before. No one piece of research is perfect or gives us the full picture. Science builds its understanding in stages and, as we continue to learn, research that was shown to be effective may be overtaken by something else that works better. By looking at the date of publication you can assess the likelihood that newer research may have been completed that either builds on or challenges this paper's findings. You can also search for other articles that have made reference to the piece you are reading, in order to review how other scientists in the community have responded to it.
An example - in 2016 a paper is published that says cheese and pickle is the nation's favourite sandwich. In 2022 someone shares this paper with a new sandwich shop owner. Are things likely to have changed in sandwich preferences in 6 years?
Does the publication state that it is a pre-print?
This means that it has not yet been peer reviewed (i.e. checked for quality and bias by other scientists - this does not automatically mean that it is not good quality but just that it has not yet been through a rigorous review process).
An example - researcher A's paper is published as a pre-print. In it they concluded that 10% of people rated chicken sandwiches as their favourite. However when that paper is being peer reviewed other researchers notice an error in the calculation made, and the real percentage was 1%. If you find a pre-print make a note to come back and review the peer reviewed copy and compare to see if any changes have been made, or maybe you would have spotted the calculation error yourself.
Has the research been designed and co-produced with people living with Long Covid?
Quality research will be co produced by researchers, clinicians AND people with lived experience. It will involve children, young people and their families throughout the process, from designing and planning the study, deciding which questions to ask or methods to use and evaluating the outcomes before publication.
An example - if a school canteen was going to research what sandwiches it would need to make, they should get the children and teachers involved. If they designed a questionnaire that asked about sandwiches but really everybody wanted wraps that research won't be as useful to them and they might still end up with wasted food.
Do the researchers appear to understand the nuances of Long Covid?
Long Covid is a complex and multifaceted condition. Does the research explore that complexity or does it try to look at one aspect in isolation. Once again, this doesn’t mean that this paper isn’t of a good quality, but the conclusions it makes might be limited.
An example - choosing a favourite sandwich isn't necessarily as simple as ticking from a selection on the list. Maybe which sandwich someone would tick would vary day to day, be based on how near lunchtime was, or what sandwiches they have tried before.
Are they using the right measures to measure the right things?
This can be difficult to work out. Have a look at any comments or responses to that piece of work where other people might debate this. Does it make logical sense to you that X actually measures Y?
An example - in the picture above, although the measure used may be said to accurately measure the depth of a sandwich, we need to consider the variability in how people could use that measure, and if that is even the question we really want to answer. If, however, the question is how much filling can you put in a sandwich without it falling out, measuring using the tool above does not take into account where the filling is placed, where on the sandwich the measure is taken and how different people hold their sandwiches, all of which would impact on the answer to the question. Do the measures adequately compensate for any variables - or are the limitations of the measures acknowledged?
What was the inclusion/exclusion criteria for the study?
Look at the types of people that were able to participate in the research (included) and those who were left out (excluded). Would your child have been on the excluded list. Why were they excluded, was it because of their age, or a pre-exisiting health condition, or for safety considerations? Not all research outcomes can be applied to each child.
An example - the sandwich study only included women and girls between 12 and 43. Does this mean you can use it to conclude the likely sandwich preference of an 8 year old boy or an 80 year old man?
What conclusions do the authors make?
Quality researchers will include a discussion on what they could have done better, or differently. This will usually include: identifying what questions still remain unanswered, when they think their assumptions and beliefs may have biased them to read results or present information in a particular way. It is human nature to like being right. Remember the meaning of truth is also not absolute and sometimes more than one thing can be true.
An example - it can be true that research shows that cheese and pickle sandwiches are the nation's favourite, it can also be true that not everyone in the nation likes or can safely eat cheese and pickle sandwiches. Therefore if you are a sandwich shop if you used the conclusion regarding the nation's favourite sandwich to only produce cheese and pickle sandwiches you can still alienate some of your customers by not catering to a diverse set of needs.
Are any false assumptions made?
Have the researchers come to their conclusion logically? Have they assumed any facts that they were unable to find out, and were these assumptions correct?
An example - cheese and pickle sandwiches have been crowned the nation's favourite. The researchers conclude the article: "It seems fair to say, that brie and lime pickle sandwich will sell better than chicken." Is this a logical conclusion? What type of cheese and pickle were people who completed the survey asked about? Is cheddar and Branston pickle the same as brie and lime pickle?
Is the research helpful or directly relevant for people living with the condition?
Sometimes research is done to develop understanding and doesn’t immediately appear directly relevant to people living with the condition. Often research might take place in stages so individual studies alone might not drive forward changes in practice, but may contribute to building a picture about causes, effects and eventually treatments and management.
An example - research takes place into which type of flour is the most cost effective, and produces the tastiest sandwiches. It concludes that X flour is best. However X flour is not readily available in England and would need to be shipped over adding to the cost. A decision might be made that we will start growing the wheat that flour comes from but crops won't be ready for at least another year or two. The research is still useful and relevant but perhaps not immediately.
Can you do anything with the knowledge you have gained from reading the research?
Does what you have read change how you support your child? Help you understand their experience better? Or help you make decisions? Does it open up new avenues for treatment that you might be able to explore with their healthcare team? (Please be aware that it often takes time for the information gained from research to affect the real world and that particularly with medical interventions there are certain processes that need to be followed before things are adopted in clinical practice - but you can always ask the question).
An example - you've never eaten a sandwich before but you know the nation's favourite is cheese and pickle but that's not on the menu right now. But you did also read in the paper's introduction that chicken was the previous favourite, and that is available. You also understand why your friend seemed so dissapointed when the menu was missing the cheese and pickle sandwich. You can empathise with them.
We hope this blog has been helpful (and hasn't made you too hungry) - in our support guide we have also shared some questions to ask to make safe decisions about treatment.
LCK Senior Occupational Therapist
Date 22/3/22
About
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
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While children are living with life changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.
Our Mission
Purpose
We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
Our Vision
To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people