EXPERIMENTAL FERTILITY PRESERVATION INTERVENTIONS IN PRE-PUBERTAL

BOYS WITH CANCER: A REPORT ON PREFERENCES OF TEENAGE CANCER

SURVIVORS, PARENTS, AND PROVIDERS

Abha A. Gupta1; Rachel Donen2; Lillian Sung1; Katherine Boydell4; Leila Bahrambahri2; Anisha Prasad2; Sina Hadipour-Lamehsari1; Kirk Lo3;

Armando Lorenzo2

1Haematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada; 2Urology, The Hospital for Sick Children, Toronto, ON, Canada;

3Urology, Mount Sinai Hospital, Toronto, ON, Canada;4Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada

November 2, 2013

Objectives

Parents, Providers & Survivors1) Identify the factors influencing pre-pubertal testicular

biopsy decisionsInterviews

 2) Quantify preferences for testicular biopsy

Threshold Technique

I = interstitial spaceSg = spermatogoniaSc = primary spermatocytesSd = spermatidsSt = Sertoli cell nuclei

Pre-Pubertal Pubertal

Male Fertility

• Pre-pubertal testes contain primordial germ cells that are also susceptible to toxicity but do not contain mature spermatocytes

Infertility - CCSS Experience Abnormal semen parameters were noted at

cyclophosphamide dose > 7.5 g/m2

Permanent azoospermia consistently observed after the following total doses: • cyclophosphamide > 19 g/m2

• ifosfamide > 60 g/m2

• cisplatin 600 mg/m2

Lee SJ et al, JCO 2006

Alkylating Agents = Prolonged Azospermia

Most sarcoma therapy = Guarantees infertility in males

Fertility Preservation

Post-pubertal boys (Standard of Care)Sperm banking

Testicular biopsy/Mature tissue banking

Mature sperm taken out IVF and/or ICSI

Fertility Preservation

Pre-pubertal boysTesticular biopsy/Immature tissue banking?

Experimental

Extraction/Maturing sperm

IVF and/or ICSI

We can do it in mice…

First Step

Before develop fertility programIdentify needs, obstacles and resources

Preliminary researchAre parents even willing to consider testicular tissue

preservation at diagnosis?

(Ginsberg et al., 2010; van den Berg et al., 2007; Wyns et al., 2011)

Methods

Mixed methods

QualitativeInterviews

QuantitativeThreshold Technique

(Greene, 2007)

Methods

Participants

Parents of PP boys with cancerOncologists, NPs, Social Workers Survivors (male, AYA 14 -18 years)

Main Interview Questions

Providers:• Which options would you present to families?Parents and Survivors:• Would you choose biopsy or no biopsy?All Groups• What kinds of things do you think about when trying to

make your decision?

Methods: Threshold Technique

Testicular biopsy

vs.

No testicular biopsy

Data Analysis

Since November 2012• 45 interviews and 258 surveys completed

DemographicsParents =156 males = 9Median age 42 (range 23-62) years

Providers = 34 2NP, 2RN, 1 SW, males = 1129 were parents28 knew someone who had had fertility treatment

Survivors = 78Median age 17 (14-26)Leukemia 40, sarcoma 9 , lymphoma 11, other 18

Baseline Scenario

• 50% Risk of infertility from treatment• 1% Risk of Complications from biopsy• 15% Chance technology develops• $350/year cost to store tissue family pays

Preliminary Results

Preferred biopsy

• 110/152 Parents(72%)• 57/75 Survivors (76%)• 23/31 Providers (74%)

• …factors influencing their decision?• Risk of infertility, complications, cost

52% 14%39% Parents

70% Survivors

30% Providers

17% 12%

65% 5%

Why Biopsy Preferred

Chance for patients to have kids“It’s just important everyone has a chance to raise a family if

they want to. And that just because they were unlucky and got cancer there’d still be a way that they could end up having kids.”

Survivor

Preliminary Results

Parents and Survivors desires:94% Parents want biopsy option presented

89% Survivors want biopsy option presented

Preliminary ResultsNeed for Full Disclosure

“I think it’s part of disclosure. I feel if you found something on your own that your doctors didn’t tell you about, there is a risk that you are resenting the doctors for “Why didn’t they tell us about this? Why were we lucky enough to find out about it on our own and a lot of people wouldn’t be as lucky as us?

If I found out later… that you could have but nobody mentioned it, we would be angry.”

Parent

Conclusions

Parents and survivors Prefer Biopsy

Survivors and parents want to know about testicular biopsy before treatment starts

Next Step: Knowledge Translation

Develop FP Infographics1) Sperm banking2) Electro ejaculation and mature testicular tissue banking3) Immature testicular tissue banking4) Oocyte storage

Infographic Example

Questions?