RELIEF Study
Real-world Experiences of chronic pain, treatment, and symptom reLIEF in irritable bowel syndrome and inflammatory bowel disease in Ireland and the UK

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Researcher Contact Details:
Primary Researcher and Data Processor: Ms. Rebecca Lane, Pharmacology and Therapeutics, School of Pharmacy and Medical Sciences, University of Galway, Galway. Email: [email protected]

Principal Investigator and Data Controller: Prof. David Finn, Pharmacology and Therapeutics, School of Pharmacy and Medical Sciences, University of Galway, Galway. Email: [email protected]

Clinical Co-Investigators:
Prof. Laurence Egan, Consultant Gastroenterologist, School of Medicine, University of Galway, Galway.
Prof. Brian McGuire, Professor of Clinical Psychology, School of Psychology, University of Galway, Galway.

If you have any questions or concerns about the study, please contact Rebecca Lane.
Opening statement:
Thank you for your interest in this study. You are being invited to take part in a research study being carried out by Ms Rebecca Lane (PhD Student) and Prof David Finn (Pharmacology and Therapeutics, School of Pharmacy and Medical Sciences), Prof Brian McGuire (School of Psychology) and Prof Laurence Egan (School of Medicine and Galway University Hospitals) at the University of Galway, Ireland. Before you decide whether you wish to take part or not, you should read the information provided below and, if you wish, discuss with family, friends etc. Take your time– don’t feel rushed and don’t feel under pressure to make a quick decision. You should be clear about the risks and benefits of taking part in this study so that you can make a decision that’s right for you. This process is known as ‘Informed Consent’.
Voluntary Participation:
You do not have to take part in this study. Choosing not to take part will not have any consequences. Participation is voluntary. You can also change your mind about taking part in the study even after starting to complete the survey. You don’t have to give a reason, and be assured that if you do opt out, there will be no consequences.

If you begin the survey and later choose to withdraw before completing the survey, all responses you have already provided will be discarded and not included in this research study. If you decide you want to withdraw after you have completed the full survey and submitted it, it will not be possible to delete your full survey response because it will have been merged with other participants' data and will no longer be identifiable as yours.
Why Is This Study Being Done?
Chronic abdominal pain (chronic = persisting for 3 months or longer) is a common and debilitating symptom experienced by people living with irritable bowel syndrome (IBS), Inflammatory Bowel Disease (IBD), or both conditions (IBS–IBD overlap). The causes of pain can vary considerably between individuals. In IBS, pain may be linked to increased gut sensitivity, gut spasms, and/or altered communication between the gut and brain. In IBD, pain may result from ongoing inflammation, nerve changes following surgery, and/or altered gut–brain communication. Some individuals with IBD also experience pain in other parts of the body, (e.g. joint pain). In addition, factors including anxiety, low mood, fatigue, stress, and other chronic pain conditions (e.g., migraine or fibromyalgia) can influence the overall pain experience.

Although many treatments are available (medications, psychological therapies, dietary or lifestyle approaches), many people continue to experience persistent pain. This may reflect the complex and individual nature of IBS- and IBD-related pain.

This anonymous online survey study, conducted across Ireland and the United Kingdom, aims to identify different patterns of chronic abdominal pain and examine how these patterns relate to factors such as mood, stress, and other pain conditions.The study will explore which treatments appear most effective for specific pain patterns. A particular focus is understanding the experiences of people who use cannabinoids, cannabis, and cannabis-based medicines for pain relief, including whether they find these treatments beneficial.

The study seeks to improve understanding of chronic gut-related pain and support future research into more personalised approaches to pain management. The findings may also contribute to advocacy efforts and help improve support for people living with IBS and IBD.
Who is Organising and Funding this Study?
This study is being organised by PhD Student, Rebecca Lane, under the primary supervision of Prof. David Finn, and co-supervision of Prof. Laurence Egan and Prof. Brian McGuire (details above), at the University of Galway, Ireland. This peer-reviewed study is funded by the funding agency Taighde Éireann - Research Ireland.
Why Am I Being Asked to Take Part?
We are asking adults who live in Ireland and the United Kingdom who have experienced chronic abdominal pain (lasting for more than 3 months) in relation to their irritable bowel syndrome AND/OR inflammatory bowel disease to complete our survey. You are being invited to take part because you may have experience that can help us better understand chronic abdominal pain in people living with IBS and/or IBD. Your views and experiences are important to our research.

Unfortunately you cannot take part if you:
• do not have a diagnosis of irritable bowel syndrome (IBS) OR a diagnosis of inflammatory bowel disease (IBD)
• have not experienced chronic abdominal pain (lasting for more than 3 months) in relation to your IBS / IBD
• are unable to complete a survey in the English language
• Are under the age of 18 years old
What Can I Expect If I Agree to Take Part?
Informed Consent: If you agree to take part after reading this participant information, we will ask that you click ‘I have read the information and agree to participate in this study’ at the bottom of the participant information to proceed to the survey.
 
Survey Completion: You can complete the survey on a mobile, tablet or laptop device via the secure QuestionPro platform. 
Time Commitment: The survey should take approximately 15-20 minutes to complete. You can complete it whenever is most convenient for you. The survey is completely anonymous – we have no way to identify who has taken part in the study or what they said.
You will be asked questions about:
• basic demographics (age, sex, gender, ethnicity, location of residence, education, employment),
• your diagnosis of IBS and/or IBD,
• your IBS and/or IBD abdominal pain,
• other pain conditions,
• mental health, stress,
• your treatment history (including use of cannabinoids, cannabis, and cannabis-based medicines, either prescribed or non-prescribed)
• perceived effectiveness of treatments or interventions you have used for your pain.

*To help you recognise treatments you may have used, we have included some commonly used brand names alongside their generic medicine names. These are provided as examples only and do not represent a complete list of available products. The inclusion or omission of any brand, product or manufacturer does not mean that the researchers, the University of Galway, or any collaborating organisations recommend, endorse or favour those products over others.
Why are we asking you about use of cannabis, cannabinoids, and cannabis-based medicines (definitions below)?
Cannabis and products made from cannabis work by acting on a system in the body called the “endocannabinoid system”. It is important for us to understand if patients with IBS or IBD use cannabis and the perceived effect on their symptoms. Asking questions about use of cannabis, cannabinoids, and cannabis-based medicines in this questionnaire will also allow us to investigate which types of patients use cannabis, and which types of patients perceive it to be effective. There are no right or wrong answers in this section. Please be as honest as possible. All your answers are anonymous and confidential.
 
  • Cannabis: The whole plant of parts or material from the plant. For example: flowers, buds, resin and leaves
  • Cannabinoids: The biologically active components of cannabis. For example: Tetrahydrocannabinol (THC) or cannabidiol (CBD).
  • Cannabis-based medicines: Registered regulatory body approved medicinal cannabis extracts, with specific, standardised make-up. For example: THC (e.g., Dronabinol, Marinol, Nabilone), CBD (e.g., Epidiolex), or THC+CBD (e.g., Nabiximols/Sativex)
What Are the Benefits for Me Taking Part?
There will be no immediate benefit to you from taking part in this project, but it will help us to better understand the pain and treatment experiences of those living with IBS and IBD. In this way, we hope to contribute to improved management of IBD- and IBS-related pain in the future.
What Are the Risks?
Questions about mental health: This survey includes questionnaires that measure anxiety and depression levels. Some of the items may be of a personally sensitive nature and may cause distress or raise difficult issues. Information on mental health supports is available at the end of this participant information sheet.
Confidentiality: Your participation in this study will remain confidential. Neither your name nor any identifying details will be collected or included in any reports on this study. Data collected during the survey will be completely anonymous. To maintain your anonymity, please do not enter any identifiable information into the free text boxes in this survey.
A note on data misuse or breach: It is unlikely that a data misuse or breach will occur during the project. We will handle and store data in a safe, secure manner behind encryption and password-protection. We will do this in line with GDPR laws and University of Galway Data Protection policies.
What Do I Need to Know About How the Data Will Be Used and Protected?
  • The data generated from your survey responses are confidential and anonymous at the point of collection as we will not be collecting any identifiable information (e.g., name or email address).
  • The data will only be used to extend our understanding of abdominal pain, mental health and treatment experiences.
  • Only the researchers identified above, will have access to the anonymous data.
  • Once all the data have been collected, it will be combined with those from other study participants and analysed on a computer.
  • We may disseminate / publish our findings (PhD Thesis, conference presentations, journal publications), but all data will be reported as group results – no individual data will be published, and you will not be identifiable in any reports.
  • Anonymous data may be deposited in an open-access, repository.
  • Since this study is collecting fully anonymous data it falls outside the requirements of GDPR. Your anonymous information from the survey will, however, still be protected and stored in accordance with GDPR. All data will be kept in a password protected folder on a secure University of Galway cloud server. Data will be stored for 7 years after conclusion of the project, after which time they will be securely destroyed. 
  •  As the data will be anonymous at the point of collection, once you have completed and submitted the entire survey, it will be no longer possible for the researchers to identify your data, access it, or remove it from the study. 
  • If you choose to withdraw partway through the survey, any previously entered data will be discarded. We will only use fully completed survey responses.
Where Can I Get Further Information?
Study Lead: Ms. Rebecca Lane, Pharmacology and Therapeutics, School of Pharmacy and Medical Sciences, University of Galway, Galway. Email: [email protected]
Principal Investigator: Prof. David Finn, Pharmacology and Therapeutics, School of Pharmacy and Medical Sciences, University Of Galway, Galway. Email: [email protected]
If you wish to contact a neutral third party: you can email [email protected] to communicate with the Coordinator or Chair of the University of Galway Research Ethics Committee.
If I have been affected by any of the issues raised during this study who do I contact for more information?
If you have been affected by any of the topics raised or have any concerns about your mental health, please contact your general practitioner or see below for a list of resources that can provide information and support:
Ireland
• crohnscolitis.ie
• chronicpain.ie
• samaritans.org (116 123)
• Spunout.ie
• Mentalhealthireland.ie
• Aware.ie
• Jigsaw.ie
• Grow.ie (1890 474 474)
• yourmentalhealth.ie
• Shine.ie
• Pieta.ie (1800 247 247)
United Kingdom
• crohnsandcolitis.org.uk
• gutscharity.org.uk
• painuk.org
• mind.org.uk
• anxietyuk.org.uk
• rethink.org
Consent to Participate
Consent to Participate
To maintain your anonymity, please do not enter any identifiable information into the free text boxes in this survey. 

If you have any issues, you can contact the research team at [email protected].
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