Skip to main content

The Birds and the Bees and the Bank: Talking with Families About Future Fertility Amidst a Cancer Diagnosis

  • Chapter
  • First Online:
Oncofertility Medical Practice

Abstract

There are many reasons why discussions about fertility preservation may be difficult after a cancer diagnosis, though it is critical that these discussions occur prior to the start of cancer treatment in order to give patients the greatest chance of successfully having children in the future. There are many educational materials available and several new online tools that can connect patients with the information they need to make a decision about their fertility; however, face-to-face communication with health-care providers is a more effective way to convey complex information regarding cancer treatment and fertility. This chapter describes recent research into the beliefs and attitudes of adolescents and young adults regarding their fertility and how clinicians can more effectively conduct discussions about fertility with cancer patients within the difficult context of a recent cancer diagnosis.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Brock DW, Wartman SA. When competent patients make irrational choices. N Engl J Med. 1990;322:1595–9.

    Article  PubMed  CAS  Google Scholar 

  2. Levi RB, et al. Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Hematol Oncol. 2000;22:3–12.

    Article  PubMed  CAS  Google Scholar 

  3. Byrne J, et al. Effects of treatment on fertility in long-term survivors of childhood or adolescent cancer. N Engl J Med. 1987;317:1315–21.

    Article  PubMed  CAS  Google Scholar 

  4. Lee SJ, et al. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol. 2006;24:2917–31.

    Article  PubMed  Google Scholar 

  5. Ethics Committee of the American Society for Reproductive Medicine. Fertility preservation and reproduction in cancer patients. Fertil Steril. 2005;83:1622–8.

    Article  Google Scholar 

  6. Fallat ME, Hutter J, American Academy of Pediatrics Committee on Bioethics; American Academy of Pediatrics Section on Hematology/Oncology; American Academy of Pediatrics Section on Surgery. Preservation of fertility in pediatric and adolescent patients with cancer. Pediatrics. 2008;121:e1461–9.

    Article  PubMed  Google Scholar 

  7. Edge B, Holmes D, Makin G. Sperm banking in adolescent cancer patients. Arch Dis Child. 2006;91:149–52.

    Article  PubMed  CAS  Google Scholar 

  8. Soliman H, Agresta SV. Current issues in adolescent and young adult cancer survivorship. Cancer Control. 2008;15:55–62.

    PubMed  Google Scholar 

  9. Byrne J, et al. Fertility of long-term male survivors of acute lymphoblastic leukemia diagnosed during childhood. Pediatr Blood Cancer. 2004;42:364–72.

    Article  PubMed  Google Scholar 

  10. Zebrack BJ, et al. Fertility issues for young adult survivors of childhood cancer. Psychooncology. 2004;13:689–99.

    Article  PubMed  Google Scholar 

  11. Chapple A, et al. Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer. J Adolesc Health. 2007;40:69–75.

    Article  PubMed  Google Scholar 

  12. Oosterhuis BE, et al. Concerns about infertility risks among pediatric oncology patients and their parents. Pediatr Blood Cancer. 2008;50:85–9.

    Article  PubMed  Google Scholar 

  13. de Wildt SN, Taguchi N, Koren G. Unintended pregnancy during radiotherapy for cancer. Nat Clin Pract Oncol. 2009;6:175–8.

    Article  PubMed  Google Scholar 

  14. Antypas C, et al. Fetal dose evaluation during breast cancer radiotherapy. Int J Radiat Oncol Biol Phys. 1998;40:995–9.

    Article  PubMed  CAS  Google Scholar 

  15. Fertile Hope. Fertility resource guide. Austin: Fertile Hope; 2011. http://www.fertilehope.org/tool-bar/referral-guide.cfm. Accessed 20 Jul 2011.

  16. Letourneau JM, et al. A changing perspective: improving access to fertility preservation. Nat Rev Clin Oncol. 2011;8:56–60.

    Article  PubMed  Google Scholar 

  17. Quinn GP, et al. Developing a referral system for fertility preservation among patients with newly diagnosed cancer. J Natl Compr Canc Netw. 2011;9:1219–25.

    PubMed  Google Scholar 

  18. Quinn GP, et al. Oncologists’ use of patient educational materials about cancer and fertility preservation. Psychooncology. 2011. doi:10.1002/pon.2022.

  19. Schover LR, et al. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. J Clin Oncol. 2002;20:1880–9.

    Article  PubMed  Google Scholar 

  20. Quinn GP, et al. Discussion of fertility preservation with newly diagnosed patients: oncologists’ views. J Cancer Surviv. 2007;1:146–55.

    Article  PubMed  Google Scholar 

  21. Willock J, Grogan S. Involving families in the production of patient information literature. Prof Nurse. 1998;13:351–4.

    PubMed  CAS  Google Scholar 

  22. Cushen N, South J, Kruppa S. Patients as teachers: the patient’s role in improving cancer ­services. Prof Nurse. 2004;19:395–9.

    PubMed  Google Scholar 

  23. Wizowski L, Harper T, Hutchings T. Writing health information for patients and families: a guide to creating patient education materials that are easy to read, understand and use. Hamilton: Hamilton Health Sciences; 2005.

    Google Scholar 

  24. Nagel K, et al. Using plain language skills to create an educational brochure about sperm banking for adolescent and young adult males with cancer. J Pediatr Oncol Nurs. 2008;25:220–6.

    Article  PubMed  Google Scholar 

  25. Crawshaw M, et al. Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. Eur J Cancer Care. 2009;18: 381–90.

    Article  CAS  Google Scholar 

  26. Crawshaw M, Sloper P. A qualitative study of the experiences of teenagers and young adults when faced with possible or actual fertility impairment following cancer treatment. Executive summary. York: University of York; 2006.

    Google Scholar 

  27. Bleyer A, et al. Trailblazers in adolescent and young adult oncology. J Adolesc Young Adult Oncol. 2011;1:13–8.

    Google Scholar 

  28. Varni JW, Burwinkle TM, Lane M. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:1–9.

    Article  Google Scholar 

  29. Palmer SN, et al. The PedsQL™ brain tumor module: initial reliability and validity. Pediatr Blood Cancer. 2007;49:287–93.

    Article  PubMed  Google Scholar 

  30. Levi RB, Drotar D. Health-related quality of life in childhood cancer: discrepancy in parent–child reports. Int J Cancer. 1999;83:58–64.

    Article  Google Scholar 

  31. Lewandowski AS, Toliver-Sokol M, Palermo TM. Evidence-based review of subjective pediatric sleep measures. J Pediatr Psychol. 2011;36:780–93.

    Article  PubMed  Google Scholar 

  32. Vitale MG, et al. Assessment of quality of life in adolescent patients with orthopaedic problems: are adult measures appropriate? J Pediatr Orthop. 2001;21:622–8.

    PubMed  CAS  Google Scholar 

  33. Strong P. The ceremonial order of the clinic: parents, doctors, and medical bureaucracies. London: Routledge & Kegan Paul Books; 1979.

    Google Scholar 

  34. Perrin JM, MacLean WE, Perrin EC. Parental perceptions of health status and psychologic adjustment of children with asthma. Pediatrics. 1989;83:26–30.

    PubMed  CAS  Google Scholar 

  35. Wenzel L, et al. Defining and measuring reproductive concerns of female cancer survivors. J Natl Cancer Inst Monogr. 2005;2005:94–8.

    Article  Google Scholar 

  36. Quinn G, Knapp C, Murphy D. Congruence of reproductive concerns among adolescents with cancer and their parents. Pediatrics. 2012;129:930–936.

    Google Scholar 

  37. Quinn G, et al. Having cancer doesn’t change wanting a baby: health adolescent girls’ perceptions of cancer-related infertility. Pediatr Blood Cancer. 2011. (Under review).

    Google Scholar 

  38. Jozefiak T, et al. Quality of life as reported by children and parents: a comparison between students and child psychiatric outpatients. Health Qual Life Outcomes. 2010;8:136.

    Article  PubMed  Google Scholar 

  39. Davis E, et al. The relationship between proxy reported health-related quality of life and parental distress: gender differences. Child Care Health Dev. 2008;34:830–7.

    PubMed  CAS  Google Scholar 

  40. Steinsbekk S, et al. Impaired parent-reported quality of life in treatment-seeking children with obesity is mediated by high levels of psychopathology. Qual Life Res. 2009;18:1159–67.

    Article  PubMed  Google Scholar 

  41. Varni J, Limbers C, Burwinkle T. Parent proxy-report of their children’s health-related quality of life: an analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL™ 4.0 generic core scales. Health Qual Life Outcomes. 2007;5:2.

    Article  PubMed  Google Scholar 

  42. Willis G. Cognitive interviewing: a tool to improve questionnaire design. London: Sage; 2005.

    Google Scholar 

  43. Drennan J. Cognitive interviewing: verbal data in the design and pretesting of questionnaires. J Adv Nurs. 2003;42:57–63.

    Article  PubMed  Google Scholar 

  44. Varni JW, Seid M, Rode CA. The PedsQL(TM): measurement model for the pediatric quality of life inventory. Med Care. 1999;37:126–39.

    Article  PubMed  CAS  Google Scholar 

  45. Woolley ME, Bowen GL, Bowen NK. The development and evaluation of procedures to assess child self-report item validity educational and psychological measurement. Educ Psychol Meas. 2006;66:687–700.

    Article  PubMed  Google Scholar 

  46. Peterson-Sweeney K. The use of focus groups in pediatric and adolescent research. J Pediatr Health Care. 2005;19:104–10.

    Article  PubMed  Google Scholar 

  47. Walsh T, et al. The use of focus groups in the development of the PROMIS pediatrics item bank. Qual Life Res. 2008;17:725–35.

    Article  PubMed  Google Scholar 

  48. Varni JW, Seid M, Kurtin PS. PedsQL(TM) 4.0: reliability and validity of the pediatric quality of life inventory(TM) version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39:800–12.

    Article  PubMed  CAS  Google Scholar 

  49. Dozier M. Functional measurement assessment of young children’s ability to predict future behavior. Child Dev. 1991;62:1091–9.

    Article  PubMed  CAS  Google Scholar 

  50. Lukse M, Vacc N. Grief, depression, and coping in women undergoing infertility treatment. Obstet Gynecol. 1999;93:245–51.

    Article  PubMed  CAS  Google Scholar 

  51. Trevena LJ, et al. A systematic review on communicating with patients about evidence. J Eval Clin Pract. 2006;12:13–23.

    Article  PubMed  Google Scholar 

  52. Manley K. Organisational culture and consultant nurse outcomes: part 2. Nurse outcomes. Nurs Stand. 2000;14:34–9.

    Google Scholar 

  53. Manley K. A conceptual framework for advanced practice: an action research project operationalizing an advanced practitioner/consultant nurse role. J Clin Nurs. 1997;6:179–90.

    Article  PubMed  CAS  Google Scholar 

  54. Manley K, McCormack B. Practice development: purpose, methodology, facilitation and ­evaluation. Nurs Crit Care. 2003;8:22–9.

    Article  PubMed  Google Scholar 

  55. Warfield C. Nursing development unit: developing a new philosophy in the NDU. Nurs Stand. 1990;4:27–30.

    PubMed  CAS  Google Scholar 

  56. Guimond P, et al. Validation of a tool to assess health practitioners’ decision support and ­communication skills. Patient Educ Couns. 2003;50:235–45.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This work was supported by the Oncofertility Consortium NIH/NICHD 5UL1DE019587.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Gwendolyn P. Quinn Ph.D. .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2012 Springer Science+Business Media New York

About this chapter

Cite this chapter

Quinn, G.P., Knapp, C.A., Murphy, D. (2012). The Birds and the Bees and the Bank: Talking with Families About Future Fertility Amidst a Cancer Diagnosis. In: Gracia, C., Woodruff, T. (eds) Oncofertility Medical Practice. Springer, New York, NY. https://doi.org/10.1007/978-1-4419-9425-7_8

Download citation

  • DOI: https://doi.org/10.1007/978-1-4419-9425-7_8

  • Published:

  • Publisher Name: Springer, New York, NY

  • Print ISBN: 978-1-4419-9424-0

  • Online ISBN: 978-1-4419-9425-7

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics