This study will collect information about your experiences when considering how your fertility may be affected by your cancer diagnosis or treatment.

You may remember a lot of the terms in this information sheet from the Australasian Oncofertility Registry Information Sheet, but just in case you need a reminder, we have a study dictionary with words that you will see in our research study information sheet at the back of this sheet.

What is the FUTuRE Fertility Psychological Health Study?

This study will look at fertility concerns (worries) of cancer patients aged 15-25 years and their families (medical, psychological, ethical and practical) and fertility related distress that patients aged 15-25 adolescents may experience at diagnosis and after cancer treatment.

In this study we will also explore how young people without cancer feel about their fertility.

This study will give us data that will be used to improve outcomes of cancer patients and their families surrounding fertility preservation and potential infertility. Guidelines will be developed which will recommend methods of support.

What does fertility preservation mean?

Fertility preservation is the medical term used for methods of trying to protect a cancer patient’s chance of having a family in the future after successful cancer treatment.

Methods of fertility preservation depend on a patient’s age, sex, cancer diagnosis, type of cancer treatment, whether the patient has a partner at the time of diagnosis and the potential cancer involving testicular or ovarian tissue.

Why would fertility preservation concern you?

Fertility (the ability have a baby) can be affected by cancer treatment (chemotherapy, radiotherapy, surgery and bone marrow transplantation). Cancer patients of all ages have the right to expect that their fertility will be preserved whenever possible.

How will the research team be able to answer the questions?

We will have already collected some information from your cancer and fertility clinician and stored this data on the AOFR. We would also like you to fill in a questionnaire and talk to the study psychologist (interview) now and in three years’ time.

The questionnaire and interview will have questions that cover a few aspects related to your fertility, such as:

• How do discussions about your future fertility or referral for fertility preservation affect you?
• How do you feel when you think about the effect cancer might have on your fertility?
• Are there other things that have affected how you feel about your fertility (for example, the cost of services, religious or cultural factors)?
• Are there aspects of your care that have helped or made things worse?

Who is eligible for the study?

This study is open to adolescents, young adults and adult cancer patients aged 15-25 years of age who are registered on the AOFR, 6-12 months from diagnosis (initial or relapse).

What will I have to do?

Once you have given your permission (consent) you will be given details about how to complete the questionnaire either online or on paper. The questionnaire should only take 30 minutes and you can complete it in stages if you prefer. A study psychologist will contact you within five days of your consent and arrange for the best time for your telephone interview. This will take about an hour, but again it could be done in stages if you prefer. All interviews will be recorded so they can be analysed at a later date.

How long will my data be collected for?

The patients in this study will be contacted again three years after the first contact to complete a second questionnaire and interview. Most patients will have finished treatment and we are keen to see if you experience the same or different fertility related problems.

What is the consent process?

If you would like to participate in this study, please read the consent form and tick the boxes stating that you consent (agree) to participate. If you need more information, please speak with your doctor. You can also contact the research team at: info@FUTuREFertility.com.au. If English is not your first language your doctor will contact an interpreter who will explain the research study.

The consent process will differ depending on your age and will be based on the following:

• Patients older than 18 years of age will be legally responsible for consenting to their medical care, treatment options and will be able to provide their own consent.
• Patients older than 15 years of age (but less than 18 years of age) will need the consent of a parent or legal guardian as well as the patient agreeing to participate.

If you decide to withdraw your participation in the study at any stage, your data will not be collected on the AOFR from the date of withdrawal.

Can I have access to my own data?

Patients will continue to have access to their own registry data but cannot see data from the research study.

How will we protect your privacy and confidentiality?

The research team will maintain confidentiality and privacy at all times throughout consultations with doctors as well as during the consent process. Information will be stored on a password-protected spreadsheet, which can only be accessed by a small number of approved research staff.

Your information will have the same unique identifying number as your registry data so that the data can be analysed together, but it will be stored in separate files.

Your name will not be identified in any reports that are produced, and your privacy and confidentiality will be maintained at all times. The research data will only be used in the manner described in this information sheet and on the consent form.

How will your information be used and reported?

The FUTuRE Fertility research team will produce publications with data from this study. All patients and staff taking part in this research project will be sent a summary of the research findings. A full copy of our research findings will be posted on our website www.FUTuREFertility.com.au.

What are the risks and benefits to you?

Some patients may be experiencing distress as a result of their cancer diagnosis and the effects of fertility preservation. The questionnaire and interview will not put you at additional risk but it may be clear to research staff that some patients may experience increased levels for distress. The research psychologist will discuss your distress with you and work with you to develop a support plan which will help you at this difficult time. Your medical team and Dr. Anazodo will be able to be contacted so they can ensure that appropriate support has been given.

Will participating affect my care?

The way your treating doctors approach your treatment and long-term care will not be affected, regardless of whether or not you participate in this research study.
If you need further information about our study please contact either your doctor or the study research team at: info@FUTuREFertility.com.au. For more information about the study please visit the website at: www.FUTuREFertility.com.au or www.FUTuREFertility.com.nz.