In this section
Fertility Preservation measures at The Royal Children’s Hospital 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.
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.
Jayasuriya S, Peate M, Allingham C, Li N, Gillam L, Zacharin M, Downie P, Moore P, Super L, Orme L, Agresta F, Stern C, Jayasinghe Y. Satisfaction, Disappointment and Regret Surrounding Fertility Preservation Decisions in the Pediatric and Adolescent Cancer Population. JARG Accepted 16th July 2019.
Peate M, Stafford L & Jayasinghe Y. Chapter 14 Fertility and Cancer. In Ussher J, Chrisler J & Perz J. Eds. Routledge Handbook of Women’s Sexual and Reproductive Health 2019.
Wang Y, Logan S, Stern K, Wakefield CE, Cohn RJ, Agresta F, Jayasinghe Y, Deans R, Segelov E, McLachlan RI, Gerstl B, Sullivan E, Ledger WE, Anazodo A. Supportive Oncofertility Care, Psychological Health and Reproductive Concerns: A Qualitative Study. Support Care Cancer. 2019 Jun 1. doi: 10.1007/s00520-019-04883-1.
Allingham C, Gillam L, McCarthy M, Zacharin M, Jayasuriya S, Heloury Y, Orme L, Sullivan M, Peate M, Jayasinghe Y. Fertility Preservation in Children and Adolescents With Cancer: Pilot of a Decision Aid for Parents of Children and Adolescents With Cancer. JMIR Pediatrics and Parenting Nov 2018; 1(2):e10463.
Allan S, Gook D, Jayasinghe Y. The Impact of the Law in Helping or Hindering Fertility Preservation for Children with Cancer Facing Gonadotoxic Therapies. Journal of Law and Medicine Dec 2018; 26(2):322-333.
Anazodo A, Ataman L, Jayasinghe Y, Woodruff T. Oncofertility – An Emerging Discipline Rather Than a Special Consideration. Pediatric Blood and Cancer (invited review) 2018; 65 (11):e27297.
Hand M, Kemertzis M, Peate M. Gillam L, McCarthy M, Orme L, Heloury Y, Sullivan M, Zacharin M, Jayasinghe Y. A Clinical Decision Support System to Assist Paediatric Oncofertility: A Short Report. JAYAO 2018; 7(4): 509-513.
Jayasinghe Y, Wallace W, Anderson R. Ovarian Function, Fertility and Reproductive Lifespan in Cancer Patients. Expert Review of Endocrinology & Metabolism (invited review) 2018; 13(3):125-136.
Kemertzis M, Ranjithakumaran H, Peate M, Gillam L, McCarthy M, Super L McQuillan S, Drew S, Jayasinghe Y*, Orme L* [*Joint senior authorship]. Fertility Preservation Toolkit: A Clinician Resource to Assist Clinical Discussion and Decision Making in Pediatric and Adolescent Oncology. J Pediatric Hematology/ Oncology. 2018; 40 (3): e133-e139.
McDougall R, Gillam L, Delany C, Jayasinghe Y. Ethics of Fertility Preservation for Prepubertal Children: Should Clinicians Offer Procedures Where Efficacy is Largely Unproven? J Med Ethics 2018; 44 (1):27-31.
Rashedi A, Saskia F, Ataman L, Edmonds M, Silva A, Scarella A, Horbaczewska A, Anazodo A, Arvas A, de Carvlaho B, Beerendonk C, Diaz C, Suh C, Andersen C, Motta E, Greenblatt E, Van Moer E, Zand E, Reis F, Balena G, Terrado G, Rodrigues J, de Meneses e silva J, Smitz J, Medrano J, Lee J, Crepaz K, Smith K, Melo e silva L, Wildt L, del Mar Andres M, Bourlon M, Vega M, De Vos M, Khrouf M, Suzuki N, Fontoura P, Campos-Junior P, Mallmann P, Azambuja R, Marinho R, Anderson R, Jack R, Antunes R, Mitchell R, Fathi R, Adiga S, Takae S, Kim S, Romero S, Grieco S, Shaulov T, Furui T, Nelen W, Jayasinghe Y, Sugishita Y, Woodruff T. Survey of Third Party Parenting Options Associated with Fertility Preservation Available to Patients With Cancer Around the Globe. Journal of Global Oncology 2018; (4):1-7
Rashedi A, Saskia F, Ataman L, Edmonds M, Silva A, Scarella A, Horbaczewska A, Anazado A, Arvas A, de Carvlaho B, Beerendonk C, Diaz C, Suh C, Andersen C, Motta E, Greenblatt E, Van Moer E, Zand E, Reis F, Balena G, Terrado G, Rodrigues J, de Meneses e silva J, Smitz J, Medrano J, Lee J, Crepaz K, Smith K, Melo e silva L, Wildt L, del Mar Andres M, Bourlon M, Vega M, De Vos M, Khrouf M, Suzuki N, Fontoura P, Campos-Junior P, Mallmann P, Azambuja R, Marinho R, Anderson R, Jack R, Antunes R, Mitchell R, Fathi R, Adiga S, Takae S, Kim S, Romero S, Grieco S, Shaulov T, Furui T, Nelen W, Jayasinghe Y, Sugishita Y, Woodruff T. Survey of Fertility Preservation Options Available to Patients with Cancer Around the Globe. Journal of Global Oncology 2018; (4): 8-16.
Ho WLC, Bourne H, Gook D, Clarke G, Kemertzis M, Stern K, Agresta F, Heloury Y, Clarke H, Orme L, Jayasinghe Y*, Zacharin MR* [*Joint senior authorship] for the Paediatric & Adolescent Fertility Preservation Taskforce, Melbourne. A Short Report on Current Fertility Preservation Strategies for Boys. Clinical Endocrinology (Oxf) 2017; 87(3):279-285.
Li N, Jayasinghe Y, Kemertzis M, Moore P, Peate M. Fertility Preservation in Pediatric and Adolescent Oncology Patients: The Decision-making Process of Parents. Journal of Adolescent and Young Adult Oncology 2017; 6(2): 213-222.
Anazodo AC, Gerstl B, Stern C, McLachlan RI, Agresta F, Jayasinghe Y, Cohn R, Wakefield CE, Chapman M, Ledger W, Sullivan E.A. Utilising the Experience of Consumers in Consultation to Develop the Australasian Oncofertility Consortium Charter. Journal of Adolescent and Young Adult Oncology 2016; 5(3):232-9.
Anazodo AC, Stern C, McLachlan RI, Gerst B, Agresta F, Cohn RJ, Jayasinghe Y, Wakefield CE, Daly G, Chan D, Gilbert L, Kemertzis M, Orme L. M, Wand H, Viney R, Gillam L, Deans R, Jetti M, Wu J, Chapman M, Ledger W, Sullivan E A. A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality and Complications of Fertility Preservation Strategies in Australia and New Zealand. Journal of Adolescent and Young Adult Oncology 2016; 5(3):215-25.
Ataman LM, Rodrigues JK, Marinho RM, Caetano JPJ, Chehin MB, Alves da Motta EL, Serafini P, Suzuki N, Furui T, Takae S, Sugishita Y, Morishige K, Almeida-Santos T, Melo C, Buzaglo K, Irwin K, Wallace WH, Anderson RA, Mitchell RT, Telfer EE, Adiga SK, Anazodo A, Stern C, Sullivan E, Jayasinghe Y, Orme L, Cohn R, McLachlan R, Deans R, Agresta F, Gerstl B, Ledger WL, Robker RL, Silva JMM, Silva LHFM, Lunardi FO, Lee JR, Suh CS, Kim SH, De Vos M, Van Moer E, Stoop D, Vloeberghs V, Smitz J, Tournaye H, Wildt L, Winkler K, Andersen CY, Smith BM, Smith K, and Woodruff TK. Creating a Global Community of Practice for Oncofertility. Journal of Global Oncology 2016; 2 (2):83-96.
McQuillan S, Malenfant D, Jayasinghe Y, Orme L, Grover SR. Audit of Current Fertility Preservation Strategies used by Individual Pediatric Oncologists throughout Australia and New Zealand. Journal of Pediatric Oncology, 2013; 1:112-118
Hewitt JK, Jayasinghe Y, Amor DJ, Gillam LH, Warne GL, Grover S, Zacharin MR. Fertility in Turner Syndrome. Clinical Endocrinology (Oxf) 2013; 79(5): 606-14.
Cameron M, Grover S, Moore P, Jayasinghe Y. Non-chromosomal, Non-iatrogenic Premature Ovarian Failure in an Adolescent Population: A Case Series. Journal of Pediatric & Adolescent Gynecology 2008; 21(1):3-8.
Potential higher degree and postdoctoral students interested in joining the Fertility Preservation Taskforce are encouraged to investigate research opportunities by contacting Dr. Yasmin Jayasinghe, email@example.com.
Genia Rozen (PhD candidate; The University of Melbourne)Uterine function following radiation treatment. Supervisors: P Rogers, Y Jayasinghe
Zobaida Edib (PhD candidate; The University of Melbourne)Developing and evaluating
an online infertility prediction tool for young women with breast
cancer (FoRECAsT). Supervisors: M Peate, Y Jayasinghe, M Hickey
Sadunee Jayasuriya (Bachelor of Medical Science Honours; Monash University)Decision acceptance in families offered fertility preservation methods at The Royal Children’s Hospital
Meredith Hand (Bachelor of Biomedical Science Honours; University of Melbourne)Development and evaluation of a fertility preservation decision support tool for clinicians
Catherine Allingham (Bachelor of Biomedical Science Honours; University of Melbourne)Development of a novel, electronic fertility preservation decision aid for parents of children with cancer
Nancy Li (Doctor of Medicine; University of Melbourne)Decision acceptance in families offered fertility preservation methods at The Royal Children’s Hospital
Hannah Clark (Bachelor of Medical Science Honours; Monash University)
Fertility Preservation measures at The Royal Children’s Hospital Melbourne
Harene Ranjithakumaran (Bachelor of Biomedical Science Honours; University of Melbourne)Fertility Preservation Toolkit:
Implementing and evaluating a resource to assist clinical discussion and
decision making regarding fertility in paediatric oncology