Patient and public involvement

Group of students sitting around a table with a tutor

We will hold:

quarterly meetings with children and young people with long-COVID or long-term effects of infections, and
six-monthly meetings with parents and caregivers of affected children and young people, and
six-monthly meetings with children and young people from the Bristol-based Young Persons Advisory Group (YPAG).

We are aiming for an average of eight participants at each meeting.

Meeting reports will be posted below as they become available.

Meeting reports

Regular public contributor meetings with children/young people with long-COVID

October 2024

What input we wanted

The aims of the meeting were:

• to continue to help everyone get to know each other;
• to get input from our Patient and Public Involvement (PPI) contributors on how they would like meetings to be run;
• to introduce the first analyses being done for the COVID-IMPACT part of the ELUCIDate study;
• to get input from our contributors on some first results for infection and diagnosis trends from the COVID-IMPACT project.

Summary of key points (from meeting discussion)

• Contributors would like more opportunity in the meetings to talk with each other and see each other on screen. They valued interaction and having reactions to their input.
• Being supportive of each other came up frequently as something the contributors felt was important, such as recognising that everyone has different symptoms and situations, understanding that having long-COVID can affect individuals’ ability to participate, and making sure everyone has the opportunity to be heard fully.
• We need to consider how we can share results images more effectively with contributors viewing these on their phone.
• Many factors affect the patterns of SARS-CoV-2 infections, other respiratory infections, and hospital diagnoses seen in children and young people. It is important to understand the reasons for these patterns. In particular, we need to understand any factors (like healthcare access, or weather) that may cause patterns in infection and diagnoses to be correlated (both affected similarly at the same time). We will then try to account for these factors when we investigate how infections are creating a need for subsequent diagnoses. If it is not possible to do this, we will discuss them as a limitation of our analyses.

How we will use this information

We will set aside more time in our young person PPI meetings for our contributors to talk with each other without slides up. We will work with our contributors to identify ways to accommodate contributors with differing symptoms and severity of symptoms and help everyone contribute. One way could be to keep a live Mentimeter running after the session for contributors to give input in their own time, and subsequently sending a link and reminder to contributors.

Throughout our analyses we will be mindful of creating graphs that are easily understandable, and the information needed to inform children and young people with long-COVID and their families, and the wider population. As an immediate action point we will think about how we can make our materials accessible for contributors viewing them on their phone.

We will continue to think about factors that have shaped patterns of infections and diagnoses. In particular, we will consider how our analyses can account for correlations between infection and diagnoses in investigating infection as a reason for diagnoses.

Next steps

We will email contributors to ask for their comments on this report, and then upload the report to the ELUCIDate study website. We will update our role description to reflect the input received from our contributors. We will also follow-up with the contributors about being involved further with the research. We will then meet again in three months’ time.

Read the full report here: Summary report for YP PPI meeting 2024_October

10th July 2024

What input we wanted

The aims of the meeting were:

to welcome our Patient and Public Involvement (PPI) contributors to the first meeting just for children/young people with long-COVID (the long-term effects of COVID-19), and to continue to help everyone get to know each other;
to recap the overall aims and methods of the ELUCIDate study;
to recap the training which took place in the previous meeting on 13th March;
to introduce the first analyses being done for the ELUCIDate study using data from the Covid-19 Mapping and Mitigation in Schools (CoMMinS) study;
to get input from our contributors on what might affect our results.

Summary of key points (from meeting discussion)

CoMMinS provides really useful information on SARS-CoV-2 infection and symptoms in children and young people in schools. However important symptoms relevant to long-COVID, such as brain fog, were not included in the questionnaires for CoMMinS.
It is challenging to remember symptoms that have occurred over a period of several weeks. Symptoms seen as “normal” may not have been recorded. Parents/guardians may not necessarily record symptoms accurately. These issues may be particularly relevant for children/young people with long-COVID.
Some symptoms may not have been recorded if they were not considered relevant.
Some symptoms may have been experienced in different ways by different people, and this may have further affected symptom recording.
Children who were poorly may have missed study visits.

How we will use this information

The limitations of the data and analyses, as outlined above, will be thoroughly discussed when writing reports. In particular, important symptoms not captured by CoMMinS but potentially relevant to long-COVID will be highlighted.

Next steps

We will email contributors to ask for their comments on this report. It will then be put on the ELUCIDate study website. We will meet again in three months’ time to share some findings, as well as ask our contributors for their suggestions and input on how they would like the meetings to run and on what group rules they would like.

Read the full report here: Summary report for YP PPI meeting 2024_July_10

Regular public contributor meetings with parents/caregivers of children/young people with long-COVID

28th November 2024

What input we wanted

The aims of the meeting were:

• to help everyone to get to know one another;
• to get input from our PPI contributors on how they would like meetings to be run and whether they might like any training;
• to introduce the first analyses being done for the COVID-IMPACT part of the ELUCIDate study;
• to get input on the wording of descriptions of these analyses;
• to get input on some first results.

Summary of key points (from meeting discussion)

• Our PPI contributors liked having pre-meeting information. In the future, they would value study updates by email, and training.
• Our study is analysing how an initial SARS-CoV-2 infection affects new diagnoses, and separately, how a non-SARS-CoV-2 respiratory infection affects new diagnoses, grouping the diagnoses together by type. Contributors were happy with the term “Diagnoses” and suggested this be used together with a term like “Subtypes”, “Concerns” or “Complications”. They said that this term should make it clear that the diagnoses we are interested in capturing in our analyses are new, rather than pre-existing issues, and that they reflect the persistent health issues associated with long-COVID.
• Plain English is best for ease of understanding, avoiding words like “high-level” and “systematically”.
• There are many reasons why diagnoses may not be recorded in NHS healthcare records despite there being a need. This is important to consider in interpreting our results. Furthermore, our contributors have commented that long-COVID care is now being moved to ME-CFS clinics, which may further affect which diagnoses are made.

How we will use this information

We will continue to send our PPI contributors pre-meeting information. In addition, we will email our contributors with study updates in between meetings and provide information about available training.

We will include a plain English title and summary in our Statistical Analysis Plan which reflects the input of our contributors.

It is a limitation of our study that unrecorded diagnoses, diagnoses made privately, and diagnoses not given or sought despite there being a need, will be absent in NHS healthcare records, and it will be important to highlight this when writing up our analyses.

Next steps

We will email contributors to ask for their comments on this report, and then upload the report to the ELUCIDate study website. We will meet again in six months, and will email the contributors with any important study updates in the meantime.

Read the full report here: Summary report for parents & guardians PPI meeting 2024_November_28

Regular public contributor meetings with children/young people

23rd May 2024 and 27th June 2024

What input we wanted

The aims of the meeting were:

to introduce the ELUCIDate study;
to gain insight into whether Young Persons Advisory Group (YPAG) members have experienced long-COVID themselves or know someone who has, and the members’ understanding and knowledge of long-COVID
to answer any questions from YPAG members.

Summary of key points (from meeting discussion)

Long-COVID was considered to be common by most contributors. Most older Bristol YPAG contributors were aware of someone who has had long-COVID. There was good understanding of long-COVID among contributors of all ages. All contributors understood that there was a range of symptoms that could be experienced when unwell with long-COVID and that these symptoms could fluctuate and last for a long time.

Furthermore, contributors thought that being unwell for a long period of time would mean an inability to be active and social, and that a loss of social connection would risk poor mental health. Loss of education was also mentioned as an important impact of being unwell with long-COVID.

Contributors suggested several things that could help those unwell with long-COVID, including teacher, peer and online support, access to virtual classrooms & support from schools, and light exercise/activity.

How we will use this information

The points raised in this meeting will be used in conjunction with those from groups of young people with long-COVID and their parents/guardians. Together, these opinions, experiences, and what is important to contributors will inform how we communicate our findings to children and young people affected by long-COVID, their families, doctors, schools, and the public. This is important to increase understanding of long-COVID and to ensure relevance to patients and their peer networks.

Next steps

This summary report will be sent around to attending YPAG members for comment. There will be no specific follow-up with this group of YPAG members. However, we plan to invite Bristol YPAG members to discuss the ELUCIDate study in future meetings.

Read the full report here: Summary report for meetings 23 May and 27 June 2024

Regular public contributor meetings held jointly with children/young people with long-COVID and parents/caregivers

13th March 2024

What input we wanted

The aims of the meeting were:

to welcome our Patient and Public Involvement (PPI) contributors and to help everyone to get to know each other with an icebreaker;
to introduce three scientific terms relevant to the ELUCIDate study;
to answer any questions from our contributors, and give them the opportunity to raise anything they felt was important.

Next steps

We will now split our PPI group into a group of young people and a group of parents/guardians. We will meet with our group of young people about every three months, and our group of parents/guardians about every six months. The summary report from the meeting will be sent to our contributors for them to approve, along with an information sheet summarising the training content, a certificate of participation, and a short evaluation which we will use to improve future meetings.

Read the full report here: Summary report for meeting 13_March_2024

13th November 2023

What input we wanted

The aims of the meeting were:

to gain feedback on a written description of the role of public contributors working with the ELUCIDate study;
to present a part of the ELUCIDate study where anonymous health record data of children across England will be analysed, to inform submission of a written project proposal to the COVID-IMPACT consortium;
to answer any questions on the COVID-IMPACT part of the ELUCIDate study before sending contributors the plain English summary (from our project proposal) for them to review.

Summary of key points (from meeting discussion)

Children and young people with long-COVID may not have been given a referral or treatment that helped their long-COVID, especially early on in the pandemic. This is a limitation of our research.
In our study it will be important to correctly identify as many SARS-CoV-2 infections as possible.
Our study will need to adapt as our understanding of long-COVID changes.
Better information for patients and doctors based on what has been learnt by long-COVID studies, together with more NHS resources to screen and treat children and young people with long-COVID, are very important to our contributors.

How we will use this information

The draft plain English summary will be updated following contributor input and submitted to the COVID-IMPACT consortium. We will be mindful that we may need to change which outcomes we plan to investigate. Limitations of the data and analyses, for example around useful and not-useful referrals, will be thoroughly discussed in outputs like written reports.

Next steps

The draft plain English summary, role description, and summary report from the meeting on 11th September 2023, will be emailed to contributors for their comments. Input on the draft plain English summary and role description will also be asked for from young people aged 13-18 years who are part of the Young Persons Advisory Group (YPAG), in order to get additional feedback. The summary report will then be uploaded to the ELUCIDate study website, and the COVID-IMPACT project proposal finalised and submitted. Recruitment efforts will continue for additional contributors.

Read the full report here: Summary report for meeting 13_Nov_2023

Introductory meetings with public contributors

What input we wanted

The aims of each introductory meeting were:

to familiarise the new Patient and Public Involvement (PPI) contributors with the ELUCIDate study;
to ask them about their priorities for research and anything they thought was important to share at this time;
to discuss the ways in which the contributors would be involved with the study, should they be interested in being ongoing contributors.

Introductory meeting 26^th February 2024

Summary of key points (from meeting discussion)

Our contributors felt that a lack of understanding of how children and young people are affected by long-COVID has resulted in a lack of educational support being given.
Sending our contributors the questions we plan to ask the group in advance of meetings would give our contributors time to think of their responses and therefore feel more able to contribute fully.
The contributors felt that it was beneficial to talk to other young people and their families about their experiences with long-COVID.

How we will use this information

It will be important to consider sharing our study findings directly with schools and exam boards. We will send our PPI contributors the questions we plan to ask the group in advance of meetings.

Read the full report here: Summary report for introductory meeting 26_February_2024

Introductory meeting 19^th February 2024

Summary of key points (from meeting discussion)

Our contributor is managing her symptoms herself and has only been to her GP once, despite describing some severe symptoms.
Our contributor described feeling that no-one really understands the symptoms she is experiencing.

How we will use this information

We will produce evidence-based information on long-COVID for children and young people with this condition and their families. Hopefully this will enable children and young people to feel supported and understand their symptoms better. As well as this, we will aim to produce information for schools and the general public, to increase awareness of long-COVID in children and young people.

Read the full report here: Summary report for introductory meeting 19_February_2024

Introductory meeting 14^th February 2024

Summary of key points (from meeting discussion)

The severity of symptoms of long-COVID in children and young people can be shocking.
Being able to access relevant treatment on the NHS is a key priority for our contributors.
Our contributors said that research and treatments are available which can help children/young people with long-COVID. However, it is very difficult to access these through the NHS, even for those who are doctors themselves.
Our contributors felt abandoned by the NHS and that doctors are often dismissive of long-COVID. They felt they had no other option but to access healthcare privately.
Our contributors found that long-COVID clinics do not currently offer access to the range of healthcare specialities needed to treat long-COVID. Placing long-COVID clinics within paediatric mental health services is another way in which patients and their families feel that their experiences are being dismissed and invalidated.
Our contributor described how his symptoms of long-COVID have interrupted his education and time at school.

How we will use this information

We will produce information on long-COVID for patients and their families, and for doctors, with the aim to include the types of healthcare needs for long-COVID. In doing this, we will need to be mindful of the healthcare needs which are hidden due to families accessing private healthcare, and from lack of appropriate NHS referrals. We are not able to fully account for this in our study, although we will try to produce an estimate of unmet healthcare needs.

Read the full report here: Summary report for introductory meeting 14_February_2024

Introductory meeting 24^th January 2024

Summary of key points (from meeting discussion)

Our contributors told us that they have a lot of questions about long-COVID. They have also found that friends and school don’t understand long-COVID, and make negative assumptions. Much better understanding about long-COVID is needed.
Our contributors found that SARS-CoV-2 re-infection made symptoms worse.
A GP and consultant had been helpful and understanding for our contributors, but had not known what the best treatment is.
It had been a struggle to get referrals, due to a lack of specialist clinics, overwhelmed services, and the need for persistence in requesting these.
The long-COVID clinic provides useful access to multiple healthcare professionals for our teenage contributor. The occupational therapist had been particularly helpful in getting understanding and support from school.
Our contributors found support networks connecting others with long-COVID very helpful for feeling less alone and for treatment recommendations.

How we will use this information

Long-COVID clinics potentially cover a number of different healthcare areas. This could be a potential challenge for our study in measuring the need for different secondary care services if multiple healthcare areas are “coded” under a single code i.e., it is harder to examine which exact areas are useful and utilised if they are all under the heading “long-COVID clinic visit”. This is something we will need to investigate further. We hope to look at the impact of re-infection with SARS-CoV-2 infection. We will produce information on long-COVID that is tailored for different audiences: patients and their families, doctors, schools, and the public, potentially working with schools to help them share information with young people to help with peer understanding.

Read the full report here: Summary report for introductory meeting 24_January_2024

Introductory meeting 11^th September 2023

Summary of key points (from meeting discussion)

Treatments are a priority for our PPI contributors.
While clinical guidelines for long-COVID are still being established, prescriptions and referrals for children and young people with long-COVID may not be optimal.
There is substantial unmet need for healthcare, such as families choosing self-management or private healthcare over NHS GP services in response to their frustrations at accessing appropriate care. Some of this unmet need will be able to be addressed using the linked Schools Infection Survey data, but not everything will be able to be captured.
The ability to identify infections is key to correctly classifying children as either being exposed to SARS-CoV-2 or not exposed (controls).

How we will use this information

Alternative explanations for associations found in the data will need to be considered, and discussed in outputs. Unmet need for care not addressed through this study will need to be discussed in outputs as a limitation, as will limitations around identifying infections.

Read the full report here: Summary report for introductory meeting 11_September_2023

The reports summarise the experiences and opinions of our patient and public involvement (PPI) contributors, and have been reviewed and approved by the contributors involved. The information and views expressed within the reports are therefore not necessarily those of the National Institute of Health and Care Research (NIHR) or the Department of Health and Social Care. We (the ELUCIDate study team and PPI facilitators) do not recommend, advise on, or endorse, the use of any medication, therapy or treatment, nor do we diagnose patients.