Welcome to the survey

Information about the study
1. Research Project Title

Identifying priorities for research in vulvodynia – A modified Delphi study

2. Background, aims of project

We would like to invite you to participate in a research project on vulvodynia. Vulvodynia is an idiopathic pain disorder of the the vulva. It is defined as chronic vulvar pain persisting for a minimum of three months, lacking a definitive, identifiable cause, and potentially influenced by associated factors. Vulvodynia affects psychological and physical wellbeing as well as the personal, intimate, and social lives of those who live with it. Vulvodynia is not well understood by the public nor by many healthcare professionals. More research is needed to better understand the causes of vulvodynia, the best ways to treat vulvodynia symptoms, and the impacts of living with vulvodynia. Understanding the needs and preferences of people with lived experience of vulvodynia, those involved in their care, is essential to ensure research addressing these needs can be prioritised. This project aims to work with people with vulvodynia, healthcare professionals, and other stakeholders to identify and reach a consensus on the top research priorities for vulvodynia to maximise the benefits of future research investment for those affected by this condition.

Why have I been invited to take part?

You have been invited because you (1) experience vulvodynia, (2) are a healthcare professional or researcher with experience and/or expertise in vulvodynia, or (3) you work with/on behalf of people with vulvodynia (e.g., within a charity or support organisation for people with vulval pain).

3. What will happen if I take part?

You will be asked to take part in a series of research studies to identify research priorities in vulvodynia. The research will be conducted in three stages.

In Stage 1, you will be invited to suggest research questions and/or topics you believe are important for vulvodynia via a brief questionnaire with free-text response options. You will be asked to provide an email address so that the research team can contact you about the subsequent stages. You are not obligated to provide this information, and doing so does not obligate you to take part in any further surveys. You will not be contacted for any other purpose. During this stage, you will also be invited to take part in a focus group to help us gather more in-depth information on this topic. You are not obligated to take part in a focus group if you do not want to do so.

In Stage 2, you will be asked to complete an online survey to rate the importance of research questions/topics generated in Stage 1.

In Stage 3, you will be shown summary information on how others rated and ranked the research questions/topics. You will be asked to complete an additional survey to rate the importance of each question/topic again to help us produce a final list of priorities for research in vulvodynia. By responding in Stage 3, you will be given the option to enter a prize draw for the chance to win an Amazon voucher to the value of £20.
Do I have to take part?

No, you do not have to take part. Your participation in this research is voluntary.

If you do decide to take part, you can withdraw your participation at any time without needing to explain and without penalty.

For the survey portions of the research, you may withdraw at any time without penalty by pressing the ‘Exit’ button or closing the browser. You may also refuse to take part in the focus group by asking the researcher to withdraw. If you withdraw from the study, we will not collect any more data from you. However, as the survey data is anonymous and it is not possible to identify which data to withdraw, any data collected up until the point that you exit the survey will be kept and may be used in the data analysis.

For the focus groups, you will only be invited to take part if you provide us with explicit consent to contact you for this purpose. If you give your consent for us to contact you, you can still decline to take part at any stage. If you consent to take part in a focus group, you can withdraw by contacting the lead researcher (Athina Zoi Lountzi, contact information below) at any time before the focus group is due to take place. You have the right to withdraw from the study completely and decline any further contact by study staff after you withdraw. However, if the focus group has already commenced, we will be unable to remove your pseudonymised responses from the transcription.

4. Are there any potential risks in taking part?

The potential risks to you as a participant in this research are minimal. However, it is possible that discussing experiences of vulvodynia may be distressing for some people.

Are there any benefits in taking part?

We do not anticipate that taking part in this research will provide you with any direct benefits. However, your participation will provide valuable insights and perspectives that will inform the development of research priorities for vulvodynia.

What happens to the data I provide?

We are carrying out this research with funding from Wellbeing of Women and the British Society for the Study of Vulval Disease. Your survey answers will be completely anonymous, so we will not be able to identify you from your responses. Given the nature of a focus group, anonymity and confidentiality cannot be guaranteed; however, we will use all reasonable endeavours to keep the data you provide confidential. We will ensure all focus group participants understand and acknowledge the ongoing importance of maintaining confidentiality beyond the conclusion of the session. This will be explicitly included in the consent procedure for the focus group element of the research.

Research data will be securely stored in a shared Microsoft OneDrive folder accessible only to the research team. The research data will be stored in a secure, password-protected, university-affiliated drive until the analyses are complete and/or the associated papers are published. Following publication of the research findings, the data will be transferred to the University of Stirling's secure DataSTORRE storage system and stored for a minimum of ten years in line with university policy. Research data may also be shared with other researchers (including those based outside of the EEA) to be used in other research studies or for further analyses. Any data that leave the research team will be fully anonymised so that participants cannot be identified. Your IP address will not be stored.
The personal data that will be collected and processed in this study are age, sex, ethnicity, and questionnaire responses regarding vulvodynia symptoms/experiences. The University asserts that it lawful for it to process your personal data in this project as the processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. The University of Stirling is the data controller for the personal and/or special categories of personal data processed in this project.

If you wish to complain about the use of your information, please contact the University’s Data Protection Officer in the first instance (email: dataprotection@stir.ac.uk).

You can find more information about the ways that personal data is used at the University at: https://www.stir.ac.uk/about/professional-services/student-academic-and-corporate-services/policy-and-planning/legal-compliance/data-protectiongdpr/.

5. Recorded media

Participants’ responses in the focus group will be recorded and transcribed for analysis purposes via Microsoft Teams. Both audio and video will be recorded, and participants are free to keep their cameras off if they prefer. Only the researcher and the supervisor will have access to the recordings. Recordings will be transcribed verbatim to facilitate the analysis process. Potentially identifying information (e.g., names) will be changed so that no individual can be identified from the transcripts. All recordings will be destroyed after transcription.

6. Will the research be published?

Results of the research will be written up and published in a peer-reviewed open-access journal article, which will include a lay summary of the research findings. The research will also be presented at academic conferences. Findings will be shared with the public through, for example, blogs, webinars, social media posts, etc. The public dissemination strategy will be informed by stakeholders, in particular people with vulvodynia, so that those affected by the condition will be reached. A more general dissemination campaign will also be implemented to help raise awareness of vulvodynia among the general public.

7. Who has reviewed this research project?

The ethical approaches of this project have been approved via The University of Stirling General University Ethics Panel.

Who do I contact if I have concerns about this study or I wish to complain?

If you would like to know more about the study or its results, please contact the research team:

Lead Researcher:
Athina Zoi Lountzi – athina.zoi.lountzi@stir.ac.uk

Research supervisors:
Dr Hannah Durand – hannah.durand@stir.ac.uk
Dr Purva Abhyankar – purva.abhyankar@stir.ac.uk

If you would like to contact someone not directly involved in conducting the research, you can contact Professor Paul Dudchenko, Head, Division of Psychology, University of Stirling: p.a.dudchenko@stir.ac.uk


If you are concerned about your wellbeing, we advise you to contact your GP or a support helpline such as Samaritans (Telephone: 116 123), available 24 hours a day, 7 days a week. Alternatively, you can reach out to Breathing Space (Telephone: 0800 83 85 87), which operates 24 hours on weekends from Friday 6pm to Monday 6am and from 6pm to 2am on weekdays.

You may also benefit from some of the resources provided by the Vulval Pain Society (https://vulvalpainsociety.org/) and the Pelvic Pain Support Network (https://www.pelvicpain.org.uk/).

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