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The Oncologist, the Patient and CKN — Sharing Knowledge

Building a Pediatric/AYA Multidisciplinary Oncofertility Program

ParentsTalkingtoKidsby Drs. Karen Burns and Holly Hoefgen

 

The survival rate for pediatric cancer is now over 83% due to tremendous medical advances.  There are currently estimated to be over 420,000 pediatric cancer survivors living in the United States.  (Robison, 2014).  Survivors are living well into adulthood and maintaining productive and fulfilling lives.  Pediatric cancer therapy has evolved over time to include not only a curative approach, but one that allows the survivor to live a healthy lifestyle with as few therapy-related side effects as possible.

 

Survivors have voiced that infertility significantly limits their quality of life by jeopardizing their self-esteem and social/emotional well-being (Shover 2006). Unfortunately, utilization of fertility preservation counseling (FPC) has been low in most areas. Yet patients who underwent FPC are generally more satisfied. Those with positive interactions have less initial decisional conflict and decisional regret over time (Deshpande 2015). The Cancer and Blood Diseases Institute at Cincinnati Children’s Hospital Medical Center (CCHMC) is fortunate to have a thriving Comprehensive Fertility Care and Preservation Program (CFCPP), first instituted in 2009.  The goal was to see all eligible, post-pubertal patients.  Initially, our only fertility preservation options were Lupron injections for females (controversial for fertility preservation) and sperm cryopreservation for males.  Thus, our group of eligible patients was relatively small.  We worked quickly to increase our options for fertility preservation and in September, 2013 the CFCPP was born.

 

The CFCPP is a collaborative effort between the Divisions of Pediatric Oncology, Pediatric and Adolescent Gynecology, Pediatric Urology, and Reproductive Endocrinology (through our adult hospital affiliate).  Fertility preservation options at our institution now include oocyte/embryo cryopreservation and ovarian tissue cryopreservation (OTC) for females and sperm banking or testicular tissue cryopreservation (TTC) for males.  Both OTC and TTC are considered experimental procedures and require an IRB approved protocol and informed consent.  They are the only fertility preservation options available for pre-pubertal patients.  Our OTC protocol is in conjunction with the Oncofertility Consortium at Northwestern.  The TTC protocol is pending at our IRB and thus males choosing this option are currently referred to an outside institution for the procedure.

 

The goal of our CFCPP is to see all eligible patients, regardless of their risk of developing infertility as a result of their planned chemotherapy, surgery, or radiation therapy.  We have learned that patients who may be classified as low risk can have many questions surrounding the topic of infertility and benefit from a consultation.  An eligible patient is anyone who presents to the CBDI for the first time. It includes both newly diagnosed patients as well as those who transfer care to our institution.  The majority of the patients come through the Divisions of Oncology or Bone Marrow Transplantation.  While our CFCPP aims to be inclusive of all patients, we also strive to be appropriate.  Thus, we have created a list of circumstances in which a patient may not require a fertility preservation consultation.   This is a fluid list and includes those patients who will not receive chemotherapy or radiation, those for whom a curative option does not exist, those who present for second opinion only and will not receive any therapy at our institution, and those who are transferring care but already had a comprehensive consult performed at their prior institution.

 

Our Oncofertility Navigator (OFN) is vital to our system at every step.  She receives the new consult (via our inpatient New Patient Order Set or outpatient through the fertilityconsult@cchmc.org email account).  She discusses the new consult with the CFCPP oncologist on call who will provide a therapy-based infertility risk assessment and timeline.  The OFN then works with Adolescent gynecology and Pediatric Urology to determine which, if any, fertility preservation options exist for the patient.  The patient is then seen by the appropriate team members to discuss the risk of infertility and long-term effects to the ovaries/testicles, as well as potential fertility preservation options.  Our team actively uses shared decision making. We created the Fertility Preservation Choice Decision Aid (FPCDA) which outlines fertility preservation options, risks and benefits, and expected costs in a visual format, providing information in lay terms.  Together, we develop a plan that is the best fit for the individual patient and their family.  Our OFN will follow up with the family within 72 hours to answer any additional questions and arrange the next steps.  Should the family elect a research based option, our research assistant ensures all protocol procedures are followed and informed consent is obtained.

 

We have been able to streamline the process for OTC by providing the majority of steps in our facility from counseling, to surgery, and processing of the tissue itself. All attempts are made to combine the procedure with another scheduled surgery, thereby decreasing the risks of multiple anesthesias and often times assisting to decrease overall costs.  We are awaiting approval of a protocol to offer this same level of care for TTC; however, patients are currently assisted in obtaining this service at an outside affiliate hospital. Oocyte, embryo and sperm cryopreservation are arranged through the REI physician at our adult hospital affiliate. For patients wishing for sperm cryopreservation, who are unable to leave the hospital, collection is completed in a private room at CCHMC.

 

The primary key to building a successful oncofertility program is teamwork, starting with a multidisciplinary approach. It is important to educate not only families and patients, but all providers and healthcare workers involved in the patient’s care on the importance of counseling and providing preservation options to all patients undergoing cancer related treatments and/or bone marrow transplant.  Another important aspect is monitoring the quality of your program and continuing to improve your process over time.  At CCHMC, we work with both statisticians and quality improvement specialists to determine which aspects are working and where we can continue to grow.  This idea of data collection and continued quality improvement is also essential to maintaining financial assistance for our program as it allows us to show the impact we make on patient care.

 


 

 

References:

Robison L, Hudson M.  Survivors of childhood and adolescent cancer: life-long risks and responsibilities.  Nature Reviews Cancer 2014; 14:61-70.

Schover LR. Patient attitudes toward fertility preservation. Pediatric blood & cancer 2009;53:281-4.

Deshpande NA, Braun IM, Meyer FL. Cancer 2015; Nov. Wiley Online Library.

 


 

 

Drs. Karen Burns and Holly Hoefgen are the Co-Directors of the Comprehensive Fertility Care and Preservation Center at Cincinnati Children’s Hospital Medical Center.  They lead a multidisciplinary team of medical professionals dedicated to preserving fertility in children and young adults facing gonadotoxic therapy or navigating the world of childhood cancer survivorship.  For more information please call 513-636-7781 or email fertilityconsult@cchmc.org.

 


 

To read more about cancer and fertility, click here to enter the CKN Oncofertility Referral Network.

 


 

 

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