Families report that fertility information is the greatest unmet need at the time of cancer diagnosis. It is now an international standard of care to inform families in a timely manner about the risks of infertility due to gonadotoxic treatment. The benchmark for care is to provide clear and consistent information about the impact of treatment on fertility if there is a curative intent.
FP is now approved as a new technology at The RCH, with research guidance for data collection and clinical ethics approval on a case-by-case basis (including for all pre-pubescent patients). Although guidelines are available, the decision to pursue a fertility preservation procedure is individual and based on clinical judgment and patient/family preferences.
TALKING TO FAMILIES ABOUT FERTILITY RISKS 4
- Who should be there 4
- Timing and documentation 4
- Discussion points 4
- Research 5
- What to remember 5
Consider referral for fertility preservation (FP) based on medical/surgical risks, age and interest of the patient (if adult) and family. We recommend that all families are informed about this and invited to participate, regardless of whether they decide to pursue fertility preservation or not, so that results can be compared between groups. In this research, parents can give permission to researchers to use information from the medical file.
Optional consents include consent for data linking (with the registry of births, IVF centers), and consent for contact for future research. When assessed as medically safe (by all relevant teams), with our information and support, the decision then rests with the patient and family.
RCH FERTILITY PRESERVATION PRINCIPLES FOR MALES 6
- Principles 6
- Fertility preservation team can include 6
- Eligibility for the discussion 6
- Initial discussion 7
- When to consider referral in males 7
- Referral for sperm collection 7
- Male Testicluar tissue cryopreservation guidance 10
It is unacceptable for others to be in the room unless requested by the patient. Therefore, it is best to discuss fertility preservation early, as multiple collections may be needed. The parent may give consent on his or her behalf, but if the patient is 18 years or older, he or she may complete a consent form themselves.
A member of the oncology team will contact the endocrinology team by telephone and refer the patient to them if warranted using the oncofertility referral form. If the referring clinician believes that the patient/family should not yet be contacted, they will not. If the TTCP is to proceed, please document in the notes that the parent has read and understood the 'Male Fertility Preservation Information and Prior Consent Form' (as suggested by RCH Legal).
The Royal Children's Hospital Fertility Preservation Taskforce Page 14 of 57 in this field and it provides an opportunity to keep families informed about realistic.
RCH FERTILITY PRESERVATION PRINCIPLES FOR FEMALES 21
- Principle 21
- Fertility Preservation team to include 21
- Eligibility for fertiltiy discussion 22
- Initial discussion by appropriate oncology team clinician 22
- Potential indications for fertility preservation referral to gynaecology 23
- Procedure for female fertility preservation referral 23
- Handover from oncology or referral to gynaecology team 23
- Paediatric adolescent gynaecolog fertility preservation consultation 24
- Clinical ethics 25
- Fertility preservation procedre to proceed 25
- Follow-up 25
Patients must be identified by the Children's Cancer Center or the treatment team. If there is a cure intention, Section A of the Female Fertility Preservation Form can be completed electronically through EPIC (search for “fertility” in the notes). Written resources that provide an overview of fertility preservation can be distributed to the patient and her family.
Make a referral to the pediatric gynecology service at the Royal Children's Hospital using the female oncofertility referral form in the EMR. PAG FP team member or consultant will be available as soon as possible for consultation on new patients to further discuss the impact of cancer therapy on the patient's fertility. The clinician will research and communicate the expected effect of cancer treatment on fertility to the family (via published peer-reviewed articles, estimated fertility risk calculators and discussion with oncology and reproductive teams where appropriate).
Referred prepubertal female patients where the risk of infertility is moderate or high according to the treatment regimen/cumulative drug doses, where the FP is considered to be beneficial to the patient and the risk is acceptable. Other referred patients where it is felt that the FP is beneficial to the patient and that the risk is acceptable. The PAG FP team should provide the patient with age-appropriate education and logistical information about fertility preservation options.
The PAG FP team will communicate the joint decision and plan to the oncology clinician and the RBU team, particularly the impact on treatment initiation. The FP gynecology team will obtain surgical consent for the fertility preservation procedure, which must clearly state its experimental nature. To inform the gynecological consultant if there are any delays in the expected start of cancer treatment due to the FP procedure itself and to facilitate.
The Royal Children's Hospital Fertility Preservation Taskforce Page 26 of 57 satisfaction with the FP decision, report on the status of current technology and assess. Complete 'Fertility Preservation Form' - Section A. Invite patient/parent to participate in Fertility Preservation Research Audit.
CLINICAL ETHICS CHECKLIST FOR ALL FERTILITY PRESERVATION PROCEDURES 34
The parents are reluctant to inform the child about the procedure, when the child is at a developmental stage where they will be able to understand at least the basic idea of the procedure. The procedure itself has a greater than minimal risk (eg due to a co-morbidity that makes the procedure more risky than usual). The procedure carries a significant risk of not leaving one gonad intact (eg if the child only has one gonad to begin with).
The child or young person objects to having a fertility preservation procedure, but the parents still want to go ahead. If one or more items are ticked below, a clinical ethics meeting will be held - use referral form 3B (FP Post-pubertal). The procedure has a significant risk of not leaving one gonad intact (eg if the child has only one gonad).
It is unlikely that the child or young person will be able to use any stored tissue for fertility purposes in the future, but the parents will still want the procedure done. The child or adolescent objects to having the fertility preservation procedure, but parents still wish to proceed. The parents are unwilling to inform the child or young person about the procedure (where developmentally appropriate to inform), but want the procedure carried out.
IF THIS PATIENT IS REFERRED FOR FERTILITY PRESERVATION DISCUSSIONS, PLEASE GIVE THIS FORM TO THE GYNECOLOGIST. IF THIS PATIENT HAS NOT BEEN REFERRED TO A GYNECOLOGIST, PLEASE GIVE THIS FORM TO THE CHILDREN'S CANCER CENTER'S CHILDREN'S CANCER CENTER'S CHILDREN'S QUALITY AND ACCREDITATION MANAGER. Royal Children's Hospital Fertility Preservation Task Force Page 41 of 57 Yes No Surgeon consent for tissue storage.
Male fertility preservation referral form 43
The Royal Children's Hospital Fertility Preservation Taskforce Page 47 of 57 Consent to participate in future research: Yes No Surgical consent to tissue storage: Yes No IVF consent to sperm or testicular collection and storage: Yes No. Andrology of Monash IVF notified For andrology, complete 'andrology unit request for sperm storage' form and fax to and.
For requests to freeze testicular tissue prior to puberty, please contact the IVF Lab RWH) reception and ask to speak to the Lab Supervisor ([email protected]).
Male fertility preservation information and pre-consent form 49
The surgical procedure of a testicular biopsy is not experimental, but what can be done with the tissue in the future is experimental. However, for boys who have gone through puberty and cannot produce a sperm sample, a testicular biopsy may contain mature sperm that could potentially offer a real hope of fertility.
Female fertility preservation information and pre-consent form 51
Royal Children's Hospital Fertility Preservation Taskforce Page 52 of 57 during the freezing and thawing process. The procedure is offered in the hope that by the time your child has reached adulthood and wants to have a child, the procedures may be more successful. We may advise against the procedure in certain situations, such as some types of cancer, where there may be a risk of cancer reproduction in the body in the future.
Sometimes we need a referral to the Clinical Ethics Committee to request approval for the procedure, if the decision is not so clear. However, using immature ovarian tissue to attempt a pregnancy in the future is considered experimental. The treatment is offered in the hope that by the time your child is an adult and wants to have a baby, the procedures will be more successful.
Fertility preservation is not necessarily only offered if your child has an excellent chance of survival. This can be significant, for example, if there is a mass in the breast region due to tumor. In case of young age: The ovaries will usually be very small, it is very possible that a whole ovary will have to be removed.
We are not sure whether the removed ovarian tissue or the remaining ovarian tissue will be functional in the future). Monitoring ovarian function when your daughter is older for ovarian tissue or egg preservation thereafter. This is an agreement between you and the IVF center and does not involve the Royal Children's Hospital.
Having children after cancer - Males 54
Royal Children's Hospital Fertility Preservation Taskforce Page 55 of 57 What options may be available to me?. It might be embarrassing to talk about, but the easiest way is to do it in a private place by masturbating. You will be given information on how and where to do this if this is the right option for you.
If so, it may be worth talking to a male fertility specialist and exploring other ways to collect sperm that may be available to you. Some fertility preservation options are considered standard and have already been proven to work in many people. These are important things to consider when discussing and deciding what is the best option for you in this situation.
Male Fertility Preservation information and instructions for sperm banking (Produced by RWH Andrology, available from the healthcare team) b. It would be good to discuss this booklet and which sections you should read with a cancer doctor or a fertility preservation doctor. Information for men having chemotherapy and radiotherapy (Boosie produced by Reproductive Services Unit, The Women's/Melbourne IVF. Available from your healthcare team or by contacting Reproductive Services Unit RWH).
The Royal Children's Hospital is conducting a review of the fertility preservation measures that have been put in place so that we can get more information about the long-term outcome of these procedures and the experiences of young people and families during and after these discussions. It is hoped that this will help healthcare professionals better guide these discussions and help families in the future.
Having children after cancer - Females 56
