Putting PANS and PANDAS on the map
The first phase of an NIHR-funded research project for PANS and PANDAS is now complete.
We are delighted to have worked closely with Isca Evidence at the University of Exeter on this important evidence and gap map (EGM) to document the need for improved funding and further research for PANS and PANDAS. Our youth board, who worked closely with Isca Evidence, have titled the project ‘PANS PANDAS unveiled’.
Isca Evidence is one of 13 NIHR funded Evidence Synthesis Groups (ESG) in the UK commissioned under the Evidence Synthesis Programme to address knowledge gaps or to answer a specific need for public health and social care audiences. Each group review and evaluate research relating to effectiveness, cost-effectiveness and patient experience. These findings are used to drive policy change and innovation for the areas which need it most, including improving support for individuals affected by lesser-known conditions.
What is PANS PANDAS unveiled?
Last year, Isca Evidence was commissioned to embark upon a three-stage project of evidence synthesis on PANS and PANDAS, now named PANS PANDAS Unveiled.
The first stage involved accessing and reviewing every research study, that included patient data, about the conditions. The studies were collated into an interactive research tool (known as an evidence and gap map (EGM)). The map categorises studies in a multitude of ways, including research focus (experience, treatment, epidemiology etc.) and research design (observational, case report, qualitative etc.). The map is now complete and ready for anyone – including patients, caregivers, and clinicians – interested in PANS and PANDAS to navigate the existing body of research around these conditions. The group worked very closely with parents and young people within the PANS and PANDAS community throughout the project.
The team are currently working on the next stages of PANS PANDAS Unveiled which includes two systematic reviews, one reviewing evidence about experiences of PANS and PANDAS, and another reviewing treatment effectiveness. These will be completed later this year.
We are confident that it will prove to be extremely significant for future recognition and treatment of PANS and PANDAS. The map provides professionals and patients with an accessible way to understand what is known and what remains to be understood about the conditions. Significantly, the EGM demonstrates the severe lack of funded research programmes into the conditions, inarguable proof which can be used to drive policy and legislation change at the highest level.
“It has been an amazing experience creating this map with such an engaged group and with such wonderful Patient and Public Involvement and Engagement members.
We are delighted that PANS PANDAS unveiled will be welcomed by so many and the map will be a useful tool for various audiences.
To be involved in a piece of work that has a chance for a significant impact is very special.”
– Samantha Febrey, Research Fellow, Isca Evidence, University of Exeter.
Use the drop down boxes to find out more about the project, our contribution, and how you can access and use the tool.
This content has been kindly provided by the University of Exeter.
What is an evidence and gap map (EGM)?
An EGM is an interactive tool to display all of the studies that have been published about a specific topic or interest. The map is arranged with the rows as publication date and columns as research topic. It can be used to find studies on all aspects of the topic, using filters to narrow your search. Users can see how much research is available, access a summary of each study, and find links to the full text of each paper.
Why has an EGM been made for PANS and PANDAS?
The amount of research about PANS and PANDAS has been increasing since the conditions were first named in the late 1990s, but there is a lack of consensus about almost all aspects of the conditions. This uncertainty covers the causes and diagnosis of the conditions, how to treat them, and what it is like to live with PANS or PANDAS. This lack of agreement makes it difficult to decide where future research should be focused. It also means that patients, families and suspected patients experience additional challenges beyond those presented by having the conditions.
We conducted an ‘Evidence and gap map’ (EGM) which is a way of collecting and organising all published evidence about PANS and/or PANDAS and presenting it in one place via an interactive display. By doing this, anyone using the EGM could find out how much research has been done on any aspect of the conditions, and where there are gaps in the evidence.
The EGM was therefore intended to provide a clear overview of research on PANS and PANDAS. Its purpose was to:
- Allow people with an interest in PANS and PANDAS to see all the research on the topic, and easily find studies
- Make it easy to see where new studies are needed to improve our understanding of PANS and PANDAS
- Help plan future reviews of the evidence, which can provide greater consensus about the different areas of the field (causes, diagnosis, treatment, experiences etc)
How was the EGM created?
We aimed to find every study about PANS and/or PANDAS that collected some data. To do this, we searched comprehensively and included any type of study, except for letters, opinion pieces, editorials and literature reviews (that weren’t ‘systematic’). We also searched relevant websites, looked for studies that were in progress or about to be published, and included presentations from conferences. All included studies focused on people with a diagnosis of PANS or PANDAS.
Once we screened out all the irrelevant studies, we went through them all to categorise what they were about. This meant that, once they were in the EGM, they could be found by their key characteristics – for example, map users could search specifically for studies about diagnosis, or those that talk about sleep difficulties as a symptom. We coded dozens of characteristics to make the EGM detailed.
After coding the features of each study, we produced the EGM and made it available online.
What does the EGM reveal about PANS and PANDAS?
We included 445 individual pieces of research in the EGM, of which 338 were full studies and 107 were conference presentations. About half of the studies came from the USA, and there was very little from the UK. A lot of the research was of lower scientific rigour, coming from case studies that describe one patient, or a small number of patients, at a time. This type of evidence is not very useful for patients or healthcare providers. The rate at which evidence has been produced has increased a lot in the last 10 years, but there are still large gaps in the understanding of PANS/PANDAS.
It is evident that much more research is needed on PANS/PANDAS, however by producing the EGM it is now easier to see where this evidence is needed most. Some key findings were:
- There is scope for evidence reviews in almost every area of research, which could help update and solidify understanding in the field.
- New studies are needed in every area, but perhaps most urgently about the causes and clinical features of the conditions. Without this, all other areas of understanding are held back, particularly diagnosis and treatment.
- The treatments tended to focus on tackling the infection that triggered symptoms, or treating symptoms directly. However these were mostly case studies, and there was very little evidence to support these approaches in patients with PANS and PANDAS. There is enough evidence to conduct a new review of these treatments to help inform clinical practice.
- Studies reporting on the experiences of PANS and PANDAS have emerged in the last ten years, and they should be combined in a review, so that we can develop a clearer understanding of what patients, families and clinicians have experienced.
How will this help families affected by PANS and PANDAS?
Overall, there are a lot of studies about PANS and PANDAS, but the vast majority are of low rigour and offer little value when seeking to understand the conditions, or advance knowledge about diagnosis or treatment. However, the recent surge in evidence offers some promise, and at least an increased level of attention. By collating the evidence and presenting it in an EGM, we have provided a valuable resource that will allow patients, carers and clinicians to access research, and help plan for future studies.
Who was involved in the process?
Throughout this project, the team of reviewers worked closely with clinical experts, a senior representative of the PANS PANDAS UK charity, young people with the conditions, and parents of young people with the conditions. This project was funded by National Institute for Social Care and Health Research.
How do I see the evidence map?
You can access the full PANS and PANDAS EGM here. A user guide has been created which will appear as a pop up when you first access the map, or is accessible via the ‘about’ button at the top of the screen. Additionally, this short video walkthrough explains how to navigate the tool.
We would like to express our gratitude to these additional project supporters:
