Current research
Fertility Preservation measures at The Royal Children’s Hospital (RCH) Melbourne (HREC 33064)
The aim of this project is to monitor, record and report outcomes of all fertility preservation consultations for patients seen at the RCH, from 1987 when the first procedure occurred. Specifically, the team will audit mechanism of referral, record outcomes of discussions with treating teams, record referral to clinical ethics committees and why, outcome of surgery (biopsy size, follicle or sperm count, morbidity relating to surgery), and longer term gonadal and reproductive function.
Decision Acceptance in families being offered Fertility Preservation measures at The Royal Children’s Hospital (HREC 34237)
Decision regret experienced in healthcare settings has negative impacts on the quality of life and well-being of patients. Decision-making regarding fertility preservation has the potential to create a situation in which patients may experience regret due to their clinical complexity and the limited time for decision making. This study aims to evaluate the fertility preservation service at The Royal Children’s Hospital for family acceptance or regret.
Fertility Understanding through Registry and Evaluation: FUTuRE Fertility (HREC 35012)
The FUTuRE Fertility Research Team has established the first web-based, multi-site ‘Australasian Oncofertility Registry’ (AOFR). The AOFR collects data from cancer and fertility centres, including the RCH. Outcomes from the registry will monitor uptake and use of fertility preservation, future use and complications of assisted reproductive treatments giving clinicians accurate risk projections for patient’s future infertility (reproductive health) and assisting clinicians in making recommendations for fertility preservation and assisted reproductive practices. In addition, the team will use data from the AOFR and Medicare to perform a cost modelling health economics study. The research team will also develop biological, medical and psychosocial studies using the registry cohort.
Past research
Evaluation of the Fertility Preservation resource toolkit in clinical practice (HREC 34062)
It is known that paediatric oncology clinicians would greatly appreciate and welcome a systemized approach to discussing fertility preservation. While the need for a systemized approach to fertility preservation has been identified, the way this should be conducted is yet to be established. This study employed the use of a fertility preservation toolkit for clinicians to facilitate the communication of up-to-date, consistent information about fertility risk and preservation options to all newly diagnosed paediatric oncology patients/families. This practical resource included a clinician instruction booklet, checklist, referral forms, reference information regarding fertility risk of cancer treatments, and handouts for patients and families. The aim of this study was to evaluate clinician responses before and after the introduction of a newly developed fertility preservation toolkit and their perceptions on its acceptability and efficiency in facilitating fertility preservation discussions.
Development of shared decision-making tools for families and clinicians involved in fertility preservation consultations at the RCH Melbourne: A pilot study (HREC 36016)
Sub-Study A: Patients and parents report a lack of adequate information to support fertility decision-making. Decision aids (DA) are educational tools designed to support shared decision-making. They have been shown to reduce decision conflict, decision regret and enhance values-aligned decision-making. Currently, there is no DA available for parents of children undergoing gonadotoxic cancer treatments who are considering fertility preservation. We aimed to develop and evaluate an online, fertility preservation decision aid prototype for patients’ parents (an international first) at the RCH.
Sub-Study B: Calls for the implementation of centre-specific, multidisciplinary fertility preservation guidelines and pathways of care resulted in the development of a paper-based Fertility Preservation Toolkit at the RCH in 2014. In 2016, the RCH transitioned from the use of paper to primarily an electronic system with the adoption of an Electronic Medical Record (EMR). This provided an opportunity to develop an electronic Clinical Decision Support System (CDSS) within the EMR that, amongst other things, prompts fertility discussion and referral to a specialist. We aimed to develop a CDSS that increased adherence to fertility preservation guidelines and to assess clinician acceptance by reports of useability and willingness to promote the CDSS.