- 6 min read
Consumers and prostate cancer research
Your voice and experience are important! As a consumer, you have a valuable part to play in helping to improve how prostate cancer is prevented, detected, diagnosed, treated and managed in the longer term.
Who is a consumer?
In your toolkit, we define a consumer as:
- a person diagnosed with prostate cancer
- a partner or family member of someone diagnosed with prostate cancer
- a person at risk of getting prostate cancer
- a member of the public who is interested in prostate cancer.
What is consumer research?
Consumer research studies are an important way for researchers to learn about the challenges men with prostate cancer and their families face and how their quality of life and survival can be improved. By taking part in this research, you can help make a difference.
What does it mean to be involved in consumer research?
What is involved in consumer research will differ according to the study. If you are eligible, you will be given information about the research project including its purpose, what you will be required to do, how long it will take, how your information will be kept private and who you can talk to about the study. You will also be given information on possible benefits and risks, and you will be required to give your consent. Make sure you understand what is required of you before you decide to take part in the study.
Join a consumer research study today
Taking part in consumer research is often an interesting and rewarding experience. Researchers could not do these studies without the help of people like you. This part of your toolkit provides a current list of research projects that are looking for consumer involvement.
Check this page regularly for a list of consumer research projects that you may be eligible to join.
Note: all studies listed on this page must have current Human Research Ethics Approval. Unless otherwise stated, these are not PCFA studies, we do not fund them and are not involved in them. Please contact the researchers directly about these studies.
PCEssentials Hormone Therapy Study
Researchers from the University of Southern Queensland and PCFA are conducting a study seeking to understand how best to improve the quality of support available for men on hormone therapy.
You may be eligible to take part if you:
- have been diagnosed with prostate cancer and have started or are planning to start hormone therapy.
What’s involved?
- All participants will receive support information about prostate cancer and hormone therapy in the mail
- Some participants will also receive additional nurse telehealth sessions
- All participants will be followed up at 3, 6 and 12 months after they join the study.
What’s next?
To find out more, contact the study team via this link PCEssentials.
Chemotherapy and Sources of information
Researchers from the University of Sydney are conducting a study investigating how the different sources of information people encounter prior to undergoing chemotherapy can influence expectation and subsequent experience of side effects arising from chemotherapy.
During this study you will be asked about the sources of information you used to understand your treatment (e.g., doctors, family, social media) as well as what side- effects you expected and experienced as a result of chemotherapy.
They would love to hear from you if you:
- have undergone your first experience with chemotherapy for cancer in the last 12 months.
- have received chemotherapy alone or in combination with other therapies (e.g. radiation therapy)
- received your chemotherapy treatment in Australia, New Zealand, The United Kingdom or Canada
- are aged over 18 and can speak English
You are not eligible for this study if you have been treated with immunotherapy and other targeted treatments.
If you agree to participate, you will be asked to complete a 20 – 25 minute online survey.
Your participation in this survey helps us to better understand the sources of information people with cancer use and rely upon. This will enable us to focus our future research on ways to improve communication with cancer patients to reduce their burden of chemotherapy side effects.
Your participation in this research study is entirely voluntary. You are not obliged to take part.
If you would like to take part or would like more information, please click the link below:
https://sydney.au1.qualtrics.com/jfe/form/SV_2bZTv2tMfS9IJqC?source=pcfa
Identifying the survivorship care needs of men on active surveillance for prostate cancer within 12 months of diagnosis
Researchers from the University of Southern Queensland and PCFA are conducting a study to understand your experiences of being on active surveillance for prostate cancer in an anonymous online survey.
They would love to hear from you if you:
- have been diagnosed with prostate cancer and are currently undergoing active surveillance.
- have been on active surveillance less than 12 months.
- have not had any previous treatments (other than active surveillance) for prostate cancer (including focal therapies).
- can read and write English to be able to complete the survey.
Survey questions include:
- your understanding of active surveillance
- your feelings about the information you received about active surveillance
- any extra information you needed
- any concerns you have had with active surveillance
- any distress and/or physical symptoms you may have had or are experiencing.
Your participation in this survey is entirely voluntary. Please click the link below for more information or to register your interest:
https://redcap.unisq.edu.au/surveys/?s=KXMEA4NX74RK7L77
Please note: You are not obliged to take part.
You can also volunteer to be interviewed following completion of the survey, to further discuss your experiences.
Caring for Older Adults with Cancer: A qualitative study of experiences of treatment decision-making.
Researchers from the University of Sydney are conducting a study to explore older adults with cancer and their caregiver’s experiences and views about treatment decision-making.
They would love to hear from you if you:
- Identify as an older adult with an existing or previous cancer experience OR currently provide care for an older adult with cancer.
- Are able to speak English.
If you agree to participate, you will be asked to complete the following research activities:
- Complete an online questionnaire (10-15 minutes)
- Participate in a telephone interview (40-45 minutes)
Your experiences and thoughts will help us understand how treatment decisions for older adults are made and help us improve how cancer care is provided.
If you are an older adult with cancer, please click the link below for more information or to register your interest:
https://redcap.sydney.edu.au/surveys/?s=PDKRCTWKKPDKMCAK
If you are currently providing care for an older adult with cancer, please click the link below for more information or to register your interest:
