The Symptom Glossary
A co-produced glossary of antidepressant related symptoms
The Dictionary of Adverse Events is the outcome of a collaborative effort between clinicians and researchers at the University of Oxford, McPin Foundation and people with lived experience (or ‘patients’) of antidepressant treatment for depression.
This work was led by Professor Andrea Cipriani, Principal Investigator at the Oxford Precision Psychiatry Lab and the Department of Psychiatry, University of Oxford. This work was funded by the National Institute for Health Research (NIHR), the NIHR Oxford Health Biomedical Research Centre, the Oxford and Thames Valley Applied Research Collaboration, the University of Oxford and Angelini Pharma.
All medications can have unwanted effects. For example, a dry mouth. Some effects are more serious than others. Within a research study these are known as ‘adverse events’. These adverse events may, or may not, be due to the medication being studied. But it is important to record everything in case it is due to the medication.
When we looked at the research data on antidepressants, we found that there were hundreds of different ways in which adverse events were reported. With the help of a charity called McPin Foundation, we started working closely with people who have taken antidepressants to ensure that the way we describe adverse events and group them are meaningful and as easy to understand as possible (these groups are called ‘clinical codes’). We created two lists of adverse events and clinical codes – one for use by patients and one for people working in clinical practice such as doctors, pharmacists, and nurses.
Taking the lists of adverse events and clinical codes, we created this free, web-based dictionary that can be used by researchers, clinicians and patients. The aim is to help people better understand the information they need to make shared decisions with their healthcare clinician about the prescribing and use of antidepressant medications.
WHY
do we focus on antidepressants?
Antidepressants are widely prescribed (over 17% of adults in the UK are prescribed antidepressants). They are used in a range of conditions including anxiety and chronic pain, but are most commonly used to treat depression. Depression is a mental health condition experienced by up to 18% of people during their lifetime. People with depression may experience different symptoms depending on the individual. These symptoms may include persistent low mood, loss of interest in activities they once found pleasurable, tiredness and/or not sleeping well. Depression can hugely impact a person’s life, like making them feel more isolated and struggling with everyday life, but everyone is different.
WHO
is organising
and funding the project?
The project was paid for by Angelini Pharma, a pharmaceutical company focused on improving our understanding of and developing more effective treatments for mental health conditions. The Principal Investigator of the study is Professor Andrea Cipriani (Professor of Psychiatry at the University of Oxford Department of Psychiatry; Lead of the Oxford Precision Psychiatry Lab). The study was conducted by members of the Oxford Precision Psychiatry Lab in collaboration with the McPin Foundation.
WHO
has reviewed
this project?
The study underpinning the development of this website has been reviewed by Research Governance, Ethics & Assurance team at the University of Oxford, who have confirmed that no formal ethical approval was required.
Our approach
Creating a free online dictionary to explain and present the unwanted effects of antidepressant medications in a clear and accessible way
Firstly, we conducted a search of the published research on antidepressants for depression where adverse event information had been reported. We then made a list of all the adverse events, in the exact form that they were reported. For example, “abdominal pain upper” and “abdominal pain” would be extracted as two different terms, and two different adverse events. This is because two similar, but different wordings were used.
Next, we used an existing way of classifying adverse events, called the Medical Dictionary for Regulatory Agencies (MedDRA). MedDRA is a database developed to provide a single ‘standard’ wording for each adverse event that can be used internationally. This is very important because as we have seen, there can be different ways of referring to the same adverse event.
In MedDRA everything is organised into five levels arranged from very specific to very general. The figure gives an example, for the term ‘feeling queasy’. When you put in the term “feeling queasy” into the MedDRA database, the system generates a new term at each of these five different levels.
Example of MedDRA hierarchy for the lowest level term ‘feeling queasy’
SYSTEM ORGAN CLASS
Gastrointestinal disorders
HIGH LEVEL GROUP TERM
Gastrointestinal signs and symptoms
HIGH LEVEL TERM
Nausea and vomiting symptoms
PREFERRED TERM
Nausea
LOWEST LEVEL TERM
Feeling queasy
To make sense of the bewildering variety of terms we needed a good way of:
- Explaining adverse events in as clear a way as possible so everyone understands what they mean
- Organising similar adverse events into ‘groups’ – which we call ‘clinical codes’
We have tried to make sure that the groups or ‘clinical codes’ are not too broad or too specific. For example, ‘migraine’, ‘headache’ and ‘head discomfort’ were all grouped under the clinical code called ‘Headache’. We selected this clinical code first by discussing it with clinicians and researchers who are experts in depression.
Then, with the help of a charity called McPin Foundation, we worked closely with people who have taken antidepressants to ensure that both the list of adverse events and the clinical codes were meaningful and as easy to understand as possible. We created two lists of adverse events and clinical codes – one for use by patients and one for people working in clinical practice such as doctors, pharmacists, and nurses.
Taking the lists of adverse events and clinical codes, we created a web-based, free ‘dictionary’ of terms that can be used by researchers, clinicians, patients and others. This is to help people make better shared decisions with their healthcare clinician about the prescribing and use of antidepressant medications.
The same dictionary will also be used by researchers and pharmaceutical companies, so they can collect, share, and present data about the adverse effects of antidepressants in a clear and meaningful way.
