Patient Information Sheet

If you’re living with overactive bladder (OAB), you’re not alone – and your experience matters. The goal of our study is to reveal what it’s really like to live with OAB – from your perspective. This study is not just about medical symptoms. It’s about how OAB affects your everyday life: your comfort, confidence, relationships, work, and well-being. The study is being carried out in eight European countries (France, Germany, Italy, the Netherlands, Poland, Spain, Sweden, and the UK). 

Next, we describe in detail what taking part in the study involves. 

The study consists of two complementary parts. 

1. Survey. In the first phase of the study, we will conduct a large online survey, where over 2,000 people with OAB will be asked to share how the condition affects their quality of life.
2. Personal stories: At the end of the survey, you will be asked whether you want to do an interview with us, to discuss your personal experiences of everyday life with OAB. We will select around 40 participants, from different groups of gender, age and ethnicity, to participate in an interview that uses a creative method called PhotoVoice (we describe this method in more detail below).

If you prefer, you may participate only in the survey and choose not to take part in the second part of the study. 

• The results of REVEAL-OAB will help improve care and support for people with OAB.
• It will help health care professionals and health systems improve the treatments and services they provide.
• It will help governments understand the wider impact of OAB on society.
• Most importantly, it gives patients a stronger voice in decisions about their care.

By working closely with patient organisations, this study aims to empower you and others with OAB to be more involved in your care and to help shape a better future for everyone affected by this condition.

You can take part in the study if you:

• are over 18 years old;
• have been told by a doctor or other healthcare professional that you have symptoms that match OAB, or have been given a diagnosis of OAB;
• live in France, Germany, Italy, the Netherlands, Poland, Spain, Sweden, or the UK;
• you have received the patient information sheet from your healthcare professional during a consultation, by email, or by post.
• can confirm you understand this Patient Information Sheet and that you want to take part in this study.

If any of the following apply to you, unfortunately you will not be able to take part in this study: 

• You have a confirmed neurological condition known to affect bladder function (for example: multiple sclerosis, Parkinson’s disease, spinal cord injury).
• You have undergone major surgery directly involving the bladder, prostate, urethra, or pelvic structures that affect urinary function.
• You presently have a urinary tract infection (UTI).
• You have or have had cancer in your bladder, kidneys, prostate, or other urinary or reproductive organs.

In the first phase of the study, we will conduct a large online survey, where over 2,000 people with OAB in eight countries will be asked to share how the condition affects their quality of life. 

You will be able to access the survey through the REVEAL-OAB Patient Information Website, where you will find a link to the survey. 

You can access the survey through your computer, or on your mobile device. 

On the first page of the survey, you will be asked to confirm that you have received enough information about the study. You will then be asked to give your consent to take part. After this, you can begin the survey.

The survey consists of multiple-choice questions, such as:

1. Questions to help confirm whether you are able to take part.
2. Questions on clinical background (e.g. other health conditions that may affect your OAB symptoms).
3. Questions that ask you to assess your access to care and information.
4. Questions that ask about your OAB symptoms and how they affect your quality of life.
5. Questions that ask how OAB affects your working life and productivity.
6. Question on whether you wish to take part in the second phase of the study (PhotoVoice interview) and information on how to stay in touch with us. 

Completing the survey will take you about 30 minutes. 

You can complete the survey online, independently and from the comfort of your home.  If you think you will need help filling out the survey, technical or otherwise, please ask a family member or friend – or contact us! You will find our contact details at the end of this document. 

At the end of the survey, you will be asked whether you want to do an interview with us, to discuss your personal experiences of everyday life with OAB. This is optional – if you prefer, you may participate only in the survey and choose not to take part in the second part of the study.

If you want to do the interview, you will be asked to share your phone number and email address at the end of the survey.

From those who provide their contact details in the survey, we will select around 40 participants for the interview phase of the study. Unfortunately, we will not be able to interview all survey participants. We will aim to include a wide range of participants across different genders, ages, and ethnic backgrounds.

During the interview, we use a creative method called PhotoVoice. This means that, before the interview, we ask you to take a few digital photographs of your everyday life with OAB. These may be pictures of moments or items which you think tell something about everyday life with OAB: the good moments and the not-so-good, depending on what and how much you wish to share. Our aim is not to collect photographic evidence of life with OAB, but to use creative methods that help make the interview as much as possible led by you, the participant.

Preparations will not take a lot of your time, and we will provide you with detailed instructions, during a short orientation call about two weeks before the interview.

During the interview, we will discuss your photographs. You will have the opportunity to explain why you took the photos and what they reveal about your everyday life with OAB. We hope this approach will help us discuss your experiences in your own terms, rather than just following a standard list of questions. The interview will take place via an online call from the comfort of your home and will last about an hour.

We will digitally edit the pictures and re-create replica sketches that do not include any details where you could be identified. If you give your permission, we will use these sketches to illustrate the study report and, possibly, in an art exhibition at the European Parliament. We will not include the original photographs in the exhibition and the sketch replicas are edited so that they will not reveal your identity. Participation in the exhibition is entirely optional.  You may take part in the interview without giving permission for your photos to be used in this way.

If you choose to take part, you’ll be helping us learn more about OAB so we can develop better, more patient-centred care in Europe. Your contribution could make a real difference for others living with this condition. Unfortunately, we cannot pay participants for taking part in the study. However, we will compensate the patient organisations that support the study. 

Taking part in the study does not involve any major risks. However, both the survey and the interview will ask about intimate aspects of how overactive bladder affects your life. 

Having to think and talk about one’s health condition can sometimes feel overwhelming, emotionally distressing, or cause anxiety. 

For this reason, we ask you to consider this risk carefully before deciding to take part in the study. 

If taking part in the study triggers anxiety, please contact your health care provider.

The collection of data begins in early 2026 and ends in Autumn 2026. The results of the study will be published in 2027.

The results of the study will be published in a study report by the European Association of Urology, in 2027.  We will hold a publication event in Brussels, and we also hope to organise a PhotoVoice art exhibition called “Life with Overactive Bladder” at the European Parliament. If you take part in the PhotoVoice interview, we will ask for your separate permission to use the sketches of your photographs in the exhibition.  Any photos used will be edited to protect your privacy.

In addition, we will publish the results in scientific journals, policy report and conference presentations. We will also organise patient-centred events in each of the participating countries. Please sign up for the REVEAL-OAB Newsletter to stay updated on news and events.

Taking part in REVEAL-OAB is your choice and so is the storage and use of your data for future research. If you choose not to take part, it will not affect the care you would normally receive.

You can stop taking part in the study at any point in time. The decision is entirely up to you. Just let the project team know and they will explain the next steps. Please note that any information collected before you withdraw may still be used.

REVEAL-OAB brings together experts from across Europe who are working together to improve the lives of OAB patients. This study is organised and led by the European Association of Urology (EAU) Patient Office and carried out with the help of the following partner organisations:

• World Federation for Incontinence and Pelvic Pain (WFIPP)
• EAU Policy Office
• Sociedad Iberoamericana de Neurourología y Uro Ginecología (SINUG)
• International Continence Society (ICS)
• International Consultation on Incontinence Questionnaire (ICIQ)
• European Association of Urology Nurses (EAUN)

The study is supported by Medtronic, Astellas Pharma and Becton Dickinson (BD). The sponsors have no influence on the study design, data collection, analysis, or publication of results.

We will need to use information from you for this research project.

This information will include your:

• Health information.
• Demographic information (e.g. gender, age, ethnicity).
• Email address (collected from those who wish to participate in the interview).
• Phone number (collected from those who wish to participate in the interview).

People will use this information to do the research or to check your records to make sure that the research is being done properly.

People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.

The European Association of Urology is the sponsor of this research and is responsible for looking after your information. We will share your information related to this research project with the following types of organisations:

• The GoodMess (a research consultancy), Finland
• Fondazione Policlinico Universitario Campus Bio-Medico of Rome, Italy
• University of Liverpool, United Kingdom

We will keep all information about you safe and secure by:

• Collecting and storing all survey data in a secure data hub based in Europe and provided by Qualtrics. Qualtrics is certified to top international standards.

International transfers

We may share or provide access to data about you outside the UK for research related purposes to:

• Analyse the data
• Archive anonymised data

If this happens, we will only share the data that is needed. We will also make sure you can’t be identified from the data that is shared where possible. This may not be possible under certain circumstances – for instance, if you have a rare illness, it may still be possible to identify you. If your data is shared outside the UK, it will be with the following sorts of organisations:

• The GoodMess (a research consultancy), Finland.
• Fondazione Policlinico Universitario Campus Bio-Medico of Rome, Italy.
• University of Liverpool, United Kingdom.
• Qualtrics (GDPR Compliant survey tool).
• We will make sure your data is protected. Anyone who accesses your data outside the UK must do what we tell them so that your data has a similar level of protection as it does under UK law. We will make sure your data is safe outside the UK by doing the following we do not allow those who access your data outside the UK to use it for anything other than what our written contract with them says.
• We need other organisations to have appropriate security measures to protect your data which are consistent with the data security and confidentiality obligations we have. This includes having appropriate measures to protect your data against accidental loss and unauthorised access, use, changes or sharing.
• We have procedures in place to deal with any suspected personal data breach. We will tell you and applicable regulators when there has been a breach of your personal data when this is legally required. For further details about UK breach reporting rules visit the Information Commissioner's Office (ICO) website: https://ico.org.uk/for-organisations/report-a-breach.

How will we use information about you after the study ends?

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.

We will keep your study data for a maximum of 1 year. The study data will then be fully anonymised and securely archived for 30 years. Anonymised data will be stored at the Dutch national centre of expertise and repository for research data, DANS-KNAW (https://dans.knaw.nl/en/). The archived data can be used for research purposes and users who have registered with DANS-KNAW can have access to the archived data.

What are your choices about how your information is used?

• You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have.
• You have the right to ask us to access, remove, change or delete data we hold about you for the purposes of the study. You can also object to our processing of your data. We might not always be able to do this if it means we cannot use your data to do the research. If so, we will tell you why we cannot do this.
• If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study. [Dutch national centre of expertise and repository for research data, DANS-KNAW (https://dans.knaw.nl/en/)] Please note that all anonymously collected survey data will be archived, based on your informed consent.

Where can you find out more about how your information is used?

You can find out more about how we use your information, including the specific mechanism used by us when transferring your personal data out of the UK:

• Our leaflet Patient data and research leaflet - Health Research Authority.
• By asking one of the research team.
• By sending an email to Ms Sarah Collen, EAU Policy Manager at s.collen@uroweb.org.
• By contacting our UK representative at sth.urologyresearch@nhs.net or 0114 22 65412.

If you have any questions on the study, please don’t hesitate to reach out to us at the EAU Patient Office: 

Ms Esther Robijn
Senior Coordinator, EAU Patient Office
Email: e.robijn@uroweb.org
Phone: +31 (0)26 3890 680