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 overactive bladder (OAB), or have been given a diagnosis of OAB;
• live in France, Germany, Italy, the Netherlands, Poland, Spain, Sweden, or the UK;
• 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 and a QR code 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 seven sections of multiple-choice questions, grouped as follows: 

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 XX minutes [FILL IN AFTER PILOTING]. 

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 [EMBED LINK] 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 Astellas Pharma and Medtronic. The sponsors have no influence on the study design, data collection, analysis, or publication of results.

If you take part in REVEAL-OAB, we will need to collect, use, and store your personal data. This includes: 

• Health information.
• Demographic information (e.g. gender, age, ethnicity).
• Email address (optional, collected from those who wish to participate in the interview).
• Phone number (optional, collected from those who wish to participate in the interview).
• Photographs that you take from self-chosen aspects of life with OAB (optional, collected from those who wish to participate in the interview).
• Audio-recording of your voice during the interview (optional, collected from those who participate in the interview).

We will make sure your privacy is protected and your information stays safe. Your data will be anonymised, meaning that you cannot be identified from the data. Only authorised people will have access to the data. We will not collect your name or address, and your email address and phone number are collected only if you take part in the interview. We will only use your contact details to keep in touch with you, and will delete them as soon as possible, no later than the end of the study.

Your data will be kept safe and handled according to a set of rules called the General Data Protection Regulation (GDPR). This means that your data can only be collected if there’s a good reason for it. In this case, the project team needs to use the data to understand more about OAB patients’ quality of life and how it can be improved. 

• You can ask us at any time what personal information we have about you. You can also ask us to correct it, delete it, or limit how we use it.
• You may also choose to say no to certain types of processing. In addition, you have the right to receive a copy of your data in a usable format.
• If we are using your data based on your consent, you can take back that consent at any time, and this will apply to future use of your data.
• If you would like to use any of these rights, please contact our Data Protection Officer using the contact details provided at the end of this document.

Please be aware that you can choose to withdraw from the study at any time without giving a reason.  Please note that any information collected before you withdraw may still be used.

For more detailed information about how we use your date, please refer to our Privacy Notice Link to Privacy Notice

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: 

If you have any questions or requests about your personal data rights under GDPR, please contact our Data Protection Officer at the following:

Ms Sarah Collen
EAU Policy Manager
Email: s.collen@uroweb.org 
Phone: