Psychological Health Study Synopsis

The loss of reproductive function is one of the most distressing and potentially adverse consequences of successful cancer treatment. Potential or actual infertility is a major concern for patients and affects the future quality of life of cancer survivors which can lead to psychological distress. Potential or actual infertility is also a predictor for stress in present and future relationships as well as patient’s fear of rejection as a result of their impaired fertility status. There is currently no data describing the timing and extent to which a cancer patient experiences fertility-related mental health issues and the benefits of interventions such as fertility preservation (FP) and counseling.

The FUTuRE Fertility Psychological Health study aims to prospectively examine the short and long term fertility concerns of cancer patients aged 13-25 years and their families (medical, psychological, ethical and practical) in addition to exploring the fertility-related quality of life and psychological distress of 13-25 year old cancer patients (at diagnosis, during treatment and following cancer treatment) prior to starting a family compared to age matched controls.

The FUTuRE Fertility research team will undertake the research study using a mixed methods approach (interview and questionnaire) at two time points: diagnosis (baseline) and then prospectively 3 years later. There will be three cohorts engaged to participate in the questionnaire:

Cohort 1: adolescent and young adult cancer patients aged between 15-25 years registered on the Australasian Oncofertility Registry and who have consented to undertake fertility research studies and meet the inclusion criteria.

Cohort 2: matched controls (aged 15-25 years) that do not have cancer and will be recruited via universities, schools and social media.

Cohort 3: parent’s of Adolescent and Young Adult cancer patients registered with the AOFR.

Outcomes will highlight the short and long-term fertility related mental health concerns, fertility-related quality of life, effects of potential or actual infertility on relationships and sexuality and the meaning of parenthood in young people with and without cancer as well as parents of cancer patients. We will also explore the differences in psychological outcomes between patients who have had an opportunity to pursue fertility preservation and those that have not and learn about how parents and careers are affected by a child’s potential infertility.

The primary outcome of this research study will be to improve the fertility related psychosocial and quality of life outcomes of cancer patients and their families. Fertility- related psychosocial practice guidelines will be developed which will recommend strategies to improve the referral process and treatment of cancer patients and their families with elevated levels of anxiety and depression.