Fertility Understanding Through Registry and Evaluation (FUTuRE Fertility): exploring the fertility-related quality of life and psychological distress in young people with cancer, their parents and aged matched controls.

Not Applicable

Recruiting

• Conditions: Fertility-related distress; Fertility-related grief; Fertility-related sadness; Fertility-related depression; Fertility-related anger; Fertility-related disappointment; Mental Health - Depression; Cancer - Any cancer; Reproductive Health and Childbirth - Fertility including in vitro fertilisation

• Registration Number: ACTRN12615001192572
• Lead Sponsor: The Prince of Wales Foundation Grant

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2015-11-04
• Last Update Posted: 13 January 2020

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 150

Inclusion Criteria

*Patients who consent to participate in the research study and are enrolled on the Australasian Oncofertility Registry
*Parents or carers who have a child with cancer enrolled on the Australasian Oncofertility Registry
*Aged matched controls aged 15-25 years who consent to participate on the research study

For inclusion in this study, patients will be aged 15-25 years, who have agreed to have their data stored on the Australasian Oncofertility Registry and have ticked on their consent form that they wish to participate in future studies and are happy to be contacted to participate on the FUTuRE Fertility Psychological Health Research study. Patients eligible to participate will be enrolled on the registry from between 0-90 days from their cancer diagnosis. Partners/parents/carers of a participant in the cancer group will also be contacted separately to say that their child/partner has agreed to participate in this study and will offer them the opportunity at this stage, via letter to the parent/partner/carer, by the FUTuRE Fertility Clinical Psychologist, to participate in this study.

Controls aged 15-25 years will be recruited via social media as well as from participating fertility sites enrolled on the Australasian Oncofertility Registry, to which ethics approval has been received for this study. The controls maybe visiting their fertility specialist for a number of different medical conditions such as: ovulation disorders (polycystic ovaries), uterine or cervical abnormalities, including problems with the opening of the cervix or cervical mucus, or abnormalities in the shape or cavity of the uterus (uterine fibroids), endometriosis, primary ovarian insufficiency, thyroid problems, abnormal sperm production or function due to various problems, such as undescended testicles, prior infections , trauma or prior surgeries on the testicles,

Both male and female non-cancer consenting participants aged 15-25 years will be matched by 5 year age-periods and gender to consenting cancer survivors who are actively trying to have a family.

Once a patient, parent or partner, matched control consents to participate, they will be contacted by either the study psychologist or a member of the research team who will explain the research study in detail in order to verify the participant's willingness to participate. An interpreter will be made available if required by the hospital, at a cost incurred by the FUTuRE Fertility research steering group. It will also be explained to the participant that if at any stage of the research study (questionnaire/telephone interview) that a participant decides to decline or stop participation with either the questionnaire or telephone interview, they will be able to do so immediately without any repercussions.

Exclusion Criteria

*Patients who do not consent to participate in the research study
*Parents or carers who do not have a child with cancer enrolled on the Australasian Oncofertility Registry
*Aged matched controls aged 15-25 years who do not consent to participate on the research study who have or have previously had a cancer

Study & Design

• Study Type: Observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
To prospectively explore the short-term fertility concerns that cancer patients aged 15-25 years and their families have (medical, psychological and practical). Outcomes will be assessed from the questionnaire and semi-structure phone interview specifically designed for this study.[12 months ]