Investigating the Efficacy of a Paediatric Fertility Preservation Decision Aid in Parents and Adolescents and Young Adults (CAYA) Cancer Survivors

Summary

The current standard of care for paediatric patients with cancer regarding preservation of their fertility (FP) is to provide high-quality information during the clinical consultation process. However, this approach depends on health provider knowledge and communication and has been shown to be sub-optimal in some situations. This impairs the critical decision-making of patients regarding fertility testing, utilization of gametes, and continuing payment of storage fees. The fertility preservation decision aid (FP DA) may lead to a greater understanding of their fertility status for participants. This knowledge may allow participants the opportunity to assess potential fertility issues prior to the end of their reproductive window, helping to minimize missed opportunities for parenthood. This research study aims to assess the effectiveness of the use of the FP DA on unmet fertility information needs when it is provided in addition to high-quality information in parents of cancer survivors and CAYA cancer survivors compared to high-quality information alone.

Eligibility

Inclusion Criteria:

Inclusion Criteria for both parents and survivors:

* Be able to communicate in English.
* Signed written informed consent form.

Inclusion Criteria for parents only:

• Parents/guardians of CAYA survivors who were ≤25 years (2) when diagnosed with cancer and have completed curative gonadotoxic treatment

Inclusion Criteria for survivors only

* CAYA cancer survivors aged 16 years or over who have completed curative gonadotoxic treatment.
* Participants can be on long-term adjuvant or endocrine therapy.
* Participants may have achieved a pregnancy or livebirth.

Exclusion Criteria:

Exclusion Criteria for both parents and survivors:

* CAYA patients currently undergoing cancer treatment and their parents/guardians.
* CAYA patients who are palliative and their parents/guardians
* A family member already in the study.

Exclusion Criteria for survivors only:

• Minors who are not deemed to be mature minors as per protocol

Conditions2

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