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November 2, 2013

EXPERIMENTAL FERTILITY PRESERVATION INTERVENTIONS IN PRE-PUBERTAL BOYS WITH CANCER: A REPORT ON PREFERENCES OF TEENAGE CANCER SURVIVORS, PARENTS, AND PROVIDERS.

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November 2, 2013

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  1. EXPERIMENTAL FERTILITY PRESERVATION INTERVENTIONS IN PRE-PUBERTALBOYS WITH CANCER: A REPORT ON PREFERENCES OF TEENAGE CANCERSURVIVORS, 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

  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. Male Fertility Pubertal Pre-Pubertal • Pre-pubertal testes contain primordial germ cells that are also susceptible to toxicity but do not contain mature spermatocytes I = interstitial spaceSg = spermatogoniaSc = primary spermatocytesSd = spermatidsSt = Sertoli cell nuclei

  4. 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 Alkylating Agents = Prolonged Azospermia Most sarcoma therapy = Guarantees infertility in males Lee SJ et al, JCO 2006

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

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

  7. We can do it in mice…

  8. 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)

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

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

  11. 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?

  12. Methods: Threshold Technique • Testicular biopsy • vs. • No testicular biopsy

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

  14. 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

  15. 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

  16. 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

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

  18. 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

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

  20. 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

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

  22. Next Step: Knowledge Translation Develop FP Infographics • Sperm banking • Electro ejaculation and mature testicular tissue banking • Immature testicular tissue banking • Oocyte storage

  23. Infographic Example

  24. Questions?

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