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Exploring patient and provider perspectives on the intersection between fertility, genetics, and family building

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Abstract

Objective

Adolescent and young adult (AYA) cancer patients have distinct medical and psychosocial needs and fertility is a key concern. Early age of onset is a risk factor for hereditary cancer and AYAs are more likely to experience reduced fertility. This has implications for future family building decisions and fertility preservation (FP) and genetic testing/counseling (GT/GC) education.

Methods

Patients diagnosed with cancer between the ages of 18 and 39 and health care providers (HCPs) who treat AYA cancer patients were recruited from a single institution. Qualitative interviews explored AYA patients’ and HCPs’ concerns regarding their experiences discussing genetics and FP.

Results

The majority of patients (n = 17) were female (59%), and the majority of HCPs (n = 18) were male (67%). Overall, participants had differing perceptions of FP and GT/GC-related information provided during the clinical visit. Patients indicated initiating the conversation about FP and did not recall HCPs discussing GT/GC with them. HCPs indicated patients were often overwhelmed with too much information and comprehension of this discussion is limited. HCPs also felt patients’ emotions/beliefs determined their information-seeking behavior specific to FP and GT/GC. Participants felt educational materials should be developed and delivered in a video format depicting a patient–provider interaction or patient testimonial.

Conclusion

AYA patients are often overwhelmed by a cancer diagnosis; the complexity/volume of information regarding FP and GT/GC may hinder understanding and decision-making about family building. Educational materials that help patients understand what questions to ask HCPs about FP and GT/GC should be developed to improve knowledge, psychosocial well-being, and future family building decisions.

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References

  1. Bleyer A, O’Leary M, Barr R, Ries L. Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975–2000. 2006

    Google Scholar 

  2. Dorval M, Patenaude AF, Schneider KA, Kieffer SA, DiGianni L, Kalkbrenner KJ, Bromberg JI, Basili LA, Calzone K, Stopfer J, Weber BL, Garber JE (2000) Anticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility: findings from p53 and BRCA1 testing programs. J Clin Oncol 18(10):2135–2142

    Article  CAS  Google Scholar 

  3. Murphy D, Klosky JL, Reed DR, Termuhlen AM, Shannon SV, Quinn GP (2015) The importance of assessing priorities of reproductive health concerns among adolescent and young adult patients with cancer. Cancer 121(15): 2529–36. https://doi.org/10.1002/cncer.29466

  4. Carter J, Penson R, Barakat R, Wenzel L (2012) Contemporary quality of life issues affecting gynecologic cancer survivors. Hematol Oncol Clin North Am 26(1):169–194

    Article  Google Scholar 

  5. Partridge AH, Gelber S, Peppercorn J, Sampson E, Knudsen K, Laufer M, Rosenberg R, Przypyszny M, Rein A, Winer EP (2004) Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol 22(20):4174–4183

    Article  Google Scholar 

  6. Schover LR (2009) Patient attitudes toward fertility preservation. Pediatr Blood Cancer 53(2):281–284

    Article  Google Scholar 

  7. Howard-Anderson J, Ganz PA, Bower JE, Stanton AL (2012) Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. J Natl Cancer Inst 104(5):386–405

    Article  Google Scholar 

  8. Klosky JL, Simmons JL, Russell KM, Foster RH, Sabbatini GM, Canavera KE, Hodges JR, Schover LR, McDermott M (2015) Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents. Support Care Cancer 23(2):333–341

    Article  Google Scholar 

  9. Friedman LC, Kramer RM (2005) Reproductive issues for women with BRCA mutations. J Natl Cancer Inst Monogr 34:83–86

    Article  Google Scholar 

  10. Smith KR, Ellington L, Chan AY, Croyle RT, Botkin JR (2004) Fertility intentions following testing for a BRCA1 gene mutation. Cancer Epidemiol Biomark Prev 13(5):733–740

    Google Scholar 

  11. Patenaude AF, Tung N, Ryan PD, Ellisen LW, Hewitt L, Schneider KA, Tercyak KP, Aldridge J, Garber JE (2013) Young adult daughters of BRCA1/2 positive mothers: what do they know about hereditary cancer and how much do they worry? Psycho-oncology. 22(9):2024–2031

    Article  Google Scholar 

  12. Dommering CJ, Garvelink MM, Moll AC, van Dijk J, Imhof SM, Meijers-Heijboer H, Henneman L (2012) Reproductive behavior of individuals with increased risk of having a child with retinoblastoma. Clin Genet 81(3):216–223

    Article  CAS  Google Scholar 

  13. Dewanwala A, Chittenden A, Rosenblatt M, Mercado R, Garber JE, Syngal S, Stoffel EM (2011) Attitudes toward childbearing and prenatal testing in individuals undergoing genetic testing for Lynch syndrome. Familial Cancer 10(3):549–556

    Article  Google Scholar 

  14. Donnelly LS, Watson M, Moynihan C et al (2013) Reproductive decision-making in young female carriers of a BRCA mutation. Human Reprod (Oxford, England) 28(4):1006–1012

    Article  CAS  Google Scholar 

  15. Quinn GP, Vadaparampil ST, Tollin S, Miree CA, Murphy D, Bower B, Silva C (2010) BRCA carriers’ thoughts on risk management in relation to preimplantation genetic diagnosis and childbearing: when too many choices are just as difficult as none. Fertil Steril 94(6):2473–2475

    Article  Google Scholar 

  16. National Comprehensive Cancer Network (2015) About the NCCN clinical practice guidelines in oncology (NCCN Guidelines®). Adolescent and Young Adult (AYA) Oncology. NCCN Guidelines® & Clinical Resources; http://www.nccn.org/professionals/. Accessed June 26, 2015

  17. Quinn GP, Vadaparampil ST, Gwede CK, Miree C, King LM, Clayton HB, Wilson C, Munster P (2007) Discussion of fertility preservation with newly diagnosed patients: oncologists’ views. J Cancer Surviv 1(2):146–155

    Article  Google Scholar 

  18. Coccia PF, Altman J, Bhatia S, Borinstein SC, Flynn J, George S, Goldsby R, Hayashi R, Huang MS, Johnson RH, Beaupin LK, Link MP, Oeffinger KC, Orr KM, Pappo AS, Reed D, Spraker HL, Thomas DA, von Mehren M, Wechsler DS, Whelan KF, Zebrack BJ, Sundar H, Shead DA (2012) Adolescent and young adult oncology. Clinical practice guidelines in oncology. J Natl Compr Cancer Netw 10(9):1112–1150

    Article  Google Scholar 

  19. Lindlof TR, Taylor BC (2011) Sensemaking: qualitative data analysis and interpretation. In: Qualitative Communication Research Methods, vol 3, pp 241–281

    Google Scholar 

  20. Jones G, Hughes J, Mahmoodi N, Smith E, Skull J, Ledger W (2017) What factors hinder the decision-making process for women with cancer and contemplating fertility preservation treatment? Hum Reprod Update 23(4):433–457

    Article  Google Scholar 

  21. Barlevy D, Wangmo T, Elger BS, Ravitsky V (2016) Attitudes, beliefs, and trends regarding adolescent oncofertility discussions: a systematic literature review. J Adolesc Young Adult Oncol 5(2):119–134

    Article  Google Scholar 

  22. Taylor JF, Ott MA (2016) Fertility preservation after a cancer diagnosis: a systematic review of adolescents’, parents’, and providers’ perspectives, experiences, and preferences. J Pediatr Adolesc Gynecol 29(6):585–598

    Article  Google Scholar 

  23. Quinn G, Vadaparampil ST, Wilson C et al (2009) Attitudes of high-risk women toward preimplantation genetic diagnosis. Fertil Steril 91(6):2361–2368

    Article  Google Scholar 

  24. Rich TA, Liu M, Etzel CJ et al (2014) Comparison of attitudes regarding preimplantation genetic diagnosis among patients with hereditary cancer syndromes. Familial Cancer 13(2):291–299

    Article  CAS  Google Scholar 

  25. Speller B, Sissons A, Daly C, Facey M, Kennedy E, Metcalfe K, Baxter NN (2019) An evaluation of oncofertility decision support resources among breast cancer patients and health care providers. BMC Health Serv Res 19(1):101

    Article  Google Scholar 

  26. National Society of Genetic Counselors. Find a genetic counselor. https://www.nsgc.org/page/find-a-genetic-counselor

  27. Alliance for Fertility Preservation. Fertility Scout. https://www.allianceforfertilitypreservation.org/get-involved/fertility-scout

  28. Vadaparampil ST, Gwede CK, Meade C, Kelvin J, Reich RR, Reinecke J, Bowman M, Sehovic I, Quinn GP, ENRICH RESEARCH GROUP (2016) ENRICH: a promising oncology nurse training program to implement ASCO clinical practice guidelines on fertility for AYA cancer patients. Patient Educ Couns 99(11):1907–1910

    Article  Google Scholar 

  29. Vadaparampil ST, Hutchins NM, Quinn GP (2013) Reproductive health in the adolescent and young adult cancer patient: an innovative training program for oncology nurses. J Canc Educ 28(1):197–208

    Article  Google Scholar 

  30. Straughan PT, Seow A (1998) Fatalism reconceptualized: a concept to predict health screening behavior. J Gend Cult Health 3(2):85–100

    Article  Google Scholar 

  31. Kessler L, Collier A, Brewster K, Smith C, Weathers B, Wileyto EP, Halbert CH (2005) Attitudes about genetic testing and genetic testing intentions in African American women at increased risk for hereditary breast cancer. Genet Med 7(4):230–238

    Article  Google Scholar 

  32. Ardern-Jones A, Kenen R, Eeles R (2005) Too much, too soon? Patients and health professionals’ views concerning the impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. Eur J Canc Care 14(3):272–281

    Article  CAS  Google Scholar 

  33. Shin DW, Cho J, Roter DL, Kim SY, Yang HK, Park K, Kim HJ, Shin HY, Kwon TG, Park JH (2017) Attitudes toward family involvement in cancer treatment decision making: the perspectives of patients, family caregivers, and their oncologists. Psycho-oncology. 26(6):770–778

    Article  Google Scholar 

  34. Oncofertility Consortium. Preserving fertility before and after cancer treatment. 2015; https://www.savemyfertility.org/

    Google Scholar 

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Funding

The content of this research is solely the responsibility of the authors. This research was supported by funding from an institutional grant from the Adolescent and Young Adult (AYA) cancer program at the Moffitt Cancer Center. This work has also been supported in part by the Biostatistics and Bioinformatics Shared Resource at the H. Lee Moffitt Cancer Center & Research Institute, a National Cancer Institute designated Comprehensive Cancer Center (P30-CA076292). While working on this manuscript, Drs. Kasting and Hudson were supported by the National Cancer Institute of the National Institutes of Health (R25-CA090314: PI: Brandon). Further,  Dr. Kasting was supported in part  by the NIH/NCI-funded  Center for Immunization and Infection Research in Cancer, which is funded through the National Cancer Institute of the National Institute of Health (K05-CA181320: PI: Giuliano).

Author information

Authors and Affiliations

  1. Department of Health Outcomes & Behavior, Moffitt Cancer Center, Tampa, FL, USA

    Paige W. Lake, Monica L. Kasting, Lindsay Fuzzell, Janella Hudson & Susan T. Vadaparampil

  2. Center for Immunization and Infection Research in Cancer, Moffitt Cancer Center, Tampa, FL, USA

    Monica L. Kasting & Susan T. Vadaparampil

  3. Department of Public Health, Purdue University, West Lafayette, IN, USA

    Monica L. Kasting

  4. Department of Communication, University of South Florida, Tampa, FL, USA

    Marleah Dean

  5. Department of Biostatistics and Bioinformatics Shared Resources, Moffitt Cancer Center, Tampa, FL, USA

    Rodrigo Carvajal

  6. Department of Interdisciplinary Cancer Management, Moffitt Cancer Center, Tampa, FL, USA

    Damon R. Reed

  7. New York University School of Medicine, New York, NY, USA

    Gwendolyn P. Quinn

  8. College of Medicine, University of South Florida, Tampa, FL, USA

    Susan T. Vadaparampil

Authors
  1. Paige W. Lake
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  2. Monica L. Kasting
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  3. Marleah Dean
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  4. Lindsay Fuzzell
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  5. Janella Hudson
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  6. Rodrigo Carvajal
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  7. Damon R. Reed
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  8. Gwendolyn P. Quinn
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  9. Susan T. Vadaparampil
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Contributions

Conceptualization and design: STV, GQ, and DR; data curation: PL, MLK, MD, LF, JH, GQ, and STV; manuscript writing and editing: PL, MLK, MD, LF, GQ, and STV; resources: DR and RC; and software: RC. All authors have read and approved the final manuscript.

Corresponding author

Correspondence to Susan T. Vadaparampil.

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The authors declare that they have no conflicts of interest.

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Lake, P.W., Kasting, M.L., Dean, M. et al. Exploring patient and provider perspectives on the intersection between fertility, genetics, and family building. Support Care Cancer 28, 4833–4845 (2020). https://doi.org/10.1007/s00520-020-05315-1

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  • DOI: https://doi.org/10.1007/s00520-020-05315-1

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