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Fertility Discussions with adolescents and young adult cancer patients – do they occur in a timely & equitable manner?

A 2019/2020 Summer Studentship research project

Identifying any discrepancies as to when fertility preservation discussions take place and what is offered may lead to further studies comparing adult population to AYA. It may also lead to us addressing any inequities in care delivery relation to fertility education, documentation and delivery, by creating resources & refining communication & referral pathways for example.

Student: Sophie Westgarth
Supervisors: Louise Sue – Adolescent & Young Adult Cancer Nurse Specialist CDHB, Val Waugh – Adolescent & Young Adult Cancer Nurse Specialist Southern DHB, Dr Kate Gardner – Onoclogist CDHB. Louise Bremmer – Oncologist Southern DHB
Sponsor: Ruth Spearing Trust

Introduction

In New Zealand on an annual basis approximately 180-200 adolescents & young adults (AYA) are diagnosed with cancer. Fertility preservation is one of the top priorities identified by AYA with a cancer diagnosis across the world. However, up to 60% of cancer survivors do not recall the fertility discussions that took place at their diagnosis (Levin, Canada & Stern, 2010). In New Zealand the importance of discussing risk to fertility and options for preservation of fertility is a core element identified in the Standards of Care for Adolescents & Young adults with Cancer (2016) released by the AYA Cancer Network Aotearoa in 2017. Standard 6.1 states that “prior to treatment, all AYA cancer patients will be informed about the potential risks of treatment-related infertility, and, where appropriate, fertility preservation procedures will be completed”. The standards recommend that, health care teams working with AYA should assess a young person’s fertility risk, initiate fertility discussion at the point of ‘reasonable suspicion of cancer’, and ensure that clear referral and communication pathways exist between tertiary treatment centers and fertility care providers. It also states that discussion and documentation of fertility issues is a mandatory component of informed consent for treatment.

Therefore it is important that the South Island AYA Cancer Services determine whether Standard 6.1 is being met in regards to providing timely & equitable fertility discussions and referrals. Initiating a discussion around fertility risk and potential for preservation of fertility at the point of “high suspicion of cancer” will help to ensure that there is sufficient time for a young person to undergo fertility preservation procedures if desired, prior to the commencement of cancer treatment, with no adverse effect on their cancer outcome.

It is also important that all fertility discussions are clearly documented, as a lack of documentation could impact on decisions made prior to/during treatment and into survivorship for AYA. AYA express a desire for continued discussions regarding their fertility and that such discussions should be initiated by their treating team. The fertility discussion should occur at several time points during their treatment and out into survivorship care, thus addressing the young person’s changing information requirements, development and progression through life stages (Wilkes et al, 2010 and Green, Galvin, & Horne, 2013).

Aim

This study aims to identify whether discussions around fertility risks are occurring at the appropriate time in the diagnostic process for AYA, and whether all preservation options are offered and referrals made in a timely manner. Understanding the factors that affect best practice around timely fertility discussions with AYA in the South Island will help to improve outcomes and lessen distress for future AYA diagnosed with cancer.

Method

This is a multi-site, retrospective study of up to 100 AYA cancer patients who reside in the South Island at the time of diagnosis between 2013-2018. Medical records from both Christchurch and Dunedin Hospitals will be reviewed. The student will travel between both hospitals to access the medical records. The student will review all clinical documents relating to each patient including;

  • Clinical Notes – inpatient/outpatient and documents available electronically on Health Connect South and MOSAIQ database
  • Referrals made to fertility specialist service
  • Information received from fertility specialists regarding treatments offered and taken up


Where available, data will be collected from each patient’s record in the following fields:

  • Age
  • Ethnicity
  • Gender
  • Diagnosis
  • Date of diagnosis
  • Geographical location at time of diagnosis
  • Treating Service e.g. oncology, haematology pediatric oncology
  • Fertility Risk assessment documentation (stratified using fertility risk calculator)
  • Social Circumstances e.g. married, single, children
  • Timing of fertility discussion e.g. at diagnosis / post treatment / in survivorship care
  • Date of discussion
  • Evidence of options discussed
  • Who discussed the options e.g. Nurse, Consultant
  • Fertility specialist referral made?
  • Date of Fertility Referral
  • Referrer e.g. nurse, consultant
  • Gender of referrer
  • Evidence of fertility preservation treatment
  • Cancer Treatment received
  • Cancer Treatment commencement date
  • Fertility discussion at EOT
  • Fertility discussion in survivorship

This data will be analysed to identify discrepancies in fertility preservation practice and to highlight possible areas for improvement in fertility support, education, documentation and delivery.


Student Prerequisites

Medical Student

How to apply

Email louise.sue@cdhb.health.nz