Help shape the focus of future research into androgen deprivation therapy side effects

Hormone therapy, also known as androgen deprivation therapy (ADT), is a very common treatment for prostate cancer. We know that ADT can work well however, it can cause a range of side effects. These can include loss of muscle strength and size, hot flushes, tiredness, reduced libido, weight gain and changes in bone strength, among others. What we do not know is which side effects are most common and which are most troublesome to people who take ADT.

Through this survey-based study we hope to understand which side effects people experience from ADT, which have the greatest impact on their lives, and which they find most bothersome.

We want future research to focus on the problems that matter most to people who have received ADT. This study gives you an opportunity to share your experience of ADT. Your answers will help us identify which side effects have the greatest impact and what you think future research should prioritise. This will potentially shape the focus of future research into ADT side effects.

The study is being led by Dr Katherine Chin, a medical doctor and researcher at King’s College London.

You can take part if you:

• are aged 16 or over; and
• have received hormone therapy (ADT) at any point.

As the survey is completed online, you will also need access to an electronic device with an internet connection.

If you choose to take part, you will be asked to complete one anonymous online survey.

The survey will ask about your experience of ADT, any side effects you experienced and what impact, if any, they had on your day-to-day life. It will also ask about any steps you took, or support you received, to help manage these side effects.

The survey takes approximately 10–15 minutes to complete. If necessary, you can save your responses and return to finish the survey within two weeks.

Some example questions are:

“What side effects have you experienced whilst on ADT (at any point) (tick all that apply)?”

“Prior to starting ADT, how well informed did you feel about the potential side effects?”

“Do you think the side effects of ADT impacted your friends/family/partner?”

“After starting ADT, what support were you given to address any of the arising the side effects?”

The findings will be summarised and may be published in medical journals and presented at scientific or medical conferences.

No individual participant will be identifiable in any reports, presentations or publications resulting from the research.

The study data will not be made publicly available or shared with third parties.

This research is anonymous. This means that nobody, including the researchers, will be aware of your identity, and that nobody will be able to connect you to the answers you provide, even indirectly. Your answers will nevertheless be treated confidentially and the information you provide will not allow you to be identified in any research outputs/publications. Your data will be stored securely on the King’s College London computer network and retained for five years after the study has closed.

If you have any questions or want more information about this study, please contact Dr Katherine Chin using the following contact details: [email protected].