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 are 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 counselling.

Hypothesis

Cancer patients experience fertility related psychological distress at diagnosis and during the survivorship period which requires additional support and tailored follow up.

Aims

• To prospectively explore the short and long-term fertility-related concerns of cancer patients aged 15-44 years and their families (medical, psychological and practical).
• To assess the timing and severity of fertility related concerns and psychological distress experienced by cancer patients and to be able to make recommendations about the fertility related psychological support that cancer patients require at diagnosis and into the survivorship phase.
• To document the fertility related quality of life and psychological distress of cancer patients aged 15-44 years at 12 months and at 3 years following a cancer diagnosis.

Methods

In phase 2 of this study using a mixed methods approach (interview and questionnaire) we will follow up a patient’s fertility related psychological distress in the survivorship period. The same questionnaires with validated measurement tools on mental health and psychosocial function, fertility-related quality of life, reproductive concerns and the meaning of parenthood will be administered in cancer patients, parents and controls.

Patients, parents and controls will also be asked to take part in two sixty-minute semi structured interviews as part of the qualitative component of the research study. The interviews will explore themes around fertility preservation (lack of appropriate information, cost, religious or cultural factors). All interviews will be digitally recorded, transcribed and thematically analysed. If a patient experiences psychological distress throughout the interview procedure or after completing the survey, a trained oncology psychologist will be on-call and Dr Anazodo will be contacted immediately and will liaise with local staff to institute a management/support plan.

Fertility related psychological guidelines will be developed which will recommend strategies to assess fertility related distress at diagnosis and into survivorship and provide appropriate pathways for referral and support.