1. EXPERIMENTAL FERTILITY PRESERVATION INTERVENTIONS IN PRE-PUBERTAL BOYS WITH CANCER: A REPORT ON PREFERENCES OF TEENAGE CANCER SURVIVORS, PARENTS, AND PROVIDERS Abha A. Gupta 1 ; Rachel Donen 2 ; Lillian Sung 1 ; Katherine Boydell 4 ; Leila Bahrambahri 2 ; Anisha Prasad 2 ; Sina Hadipour-Lamehsari 1 ; Kirk Lo 3 ; Armando Lorenzo 2 1 Haematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada; 2 Urology, The Hospital for Sick Children, Toronto, ON, Canada; 3 Urology, Mount Sinai Hospital, Toronto, ON, Canada; 4 Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada November 2, 2013

2. Objectives Parents, Providers & Survivors 1) Identify the factors influencing pre-pubertal testicular biopsy decisions Interviews 2) Quantify preferences for testicular biopsy Threshold Technique

3. I = interstitial space Sg = spermatogonia Sc = primary spermatocytes Sd = spermatids St = 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

4. Infertility - CCSS Experience Abnormal semen parameters were noted at cyclophosphamide dose > 7.5 g/m 2 Permanent azoospermia consistently observed after the following total doses: cyclophosphamide > 19 g/m 2 ifosfamide > 60 g/m 2 cisplatin 600 mg/m 2 Lee SJ et al, JCO 2006 Alkylating Agents = Prolonged Azospermia Most sarcoma therapy = Guarantees infertility in males

7. Fertility Preservation Post-pubertal boys (Standard of Care) Sperm banking Testicular biopsy/Mature tissue banking Mature sperm taken out IVF and/or ICSI

8. Fertility Preservation Pre-pubertal boys Testicular biopsy/Immature tissue banking? Experimental Extraction/Maturing sperm IVF and/or ICSI

9. We can do it in mice…

10. First Step Before develop fertility program Identify needs, obstacles and resources Preliminary research Are parents even willing to consider testicular tissue preservation at diagnosis? (Ginsberg et al., 2010; van den Berg et al., 2007; Wyns et al., 2011)

11. Methods Mixed methods Qualitative Interviews Quantitative Threshold Technique (Greene, 2007)

12. Methods Participants Parents of PP boys with cancer Oncologists, NPs, Social Workers Survivors (male, AYA 14 -18 years)

13. 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?

14. Methods: Threshold Technique Testicular biopsy vs. No testicular biopsy

15. Data Analysis Since November 2012 45 interviews and 258 surveys completed

16. Demographics Parents =156 males = 9 Median age 42 (range 23-62) years Providers = 34 2NP, 2RN, 1 SW, males = 11 29 were parents 28 knew someone who had had fertility treatment Survivors = 78 Median age 17 (14-26) Leukemia 40, sarcoma 9, lymphoma 11, other 18

17. 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

18. 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

19. 52% 14% 39% Parents 70% Survivors 30% Providers 17%12% 65%5%

20. 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

21. Preliminary Results Parents and Survivors desires: 94% Parents want biopsy option presented 89% Survivors want biopsy option presented

22. Preliminary Results Need 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

23. Conclusions Parents and survivors Prefer Biopsy Survivors and parents want to know about testicular biopsy before treatment starts

24. Next Step: Knowledge Translation Develop FP Infographics 1)Sperm banking 2)Electro ejaculation and mature testicular tissue banking 3)Immature testicular tissue banking 4)Oocyte storage

25. Infographic Example

26. Questions?