Individuals affected by cancer report a need for information about fertility from health care professionals (HCPs), in order to inform decision making and alleviate anxiety. However, there is evidence that many health professionals do not engage in such discussions.
A mixed method design was used to examine the construction and subjective experience of communication with health professionals about fertility in the context of cancer, from the perspective of patients. A survey was completed by 693 women and 185 men, across a range of cancer tumour types and age groups, and in-depth one-to-one interviews conducted with a purposively selected subsample of survey respondents, 61 women and 17 men. The chi square test for independence was used to test for group differences between women and men on closed survey items. Thematic analysis was used to examine the open ended survey responses and interviews.
Significantly more women (57%, n = 373) than men (46%, n = 80) (X2(2517) = 6.54, p = .011) reported that they had discussed fertility with a HCP since diagnosis of cancer. Satisfaction with the discussion was reported by 65% (n = 242) of women and 69% (n = 54) (ns) of men. This discussion was reported to have been initiated by the patient or their partner in 44% (n = 165) of women and 47% (n = 37) (ns) of men. In the interviews and open ended surveys three themes were identified: Feeling heard and informed about fertility after cancer: Positive experiences of HCP communication; “I was never given full disclosure”: HCP silence or reticence about discussing fertility after cancer, including the sub-theme “Their primary concern is getting me cancer free”: Constructions of absence of fertility communication by HCPs; and Confusion and lack of compassion: Unsatisfactory information provision about fertility and cancer.
Discussion with a HCP about fertility concerns, and satisfaction with the discussion, was associated with reports of lower patient distress, greater knowledge and understanding of the consequences of cancer on fertility, involvement in the decision making process about fertility preservation, and satisfaction with health care.
Benedict C, Shuk E, Ford JS. Fertility issues in adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol. 2016;5(1):48–57. doi: https://doi.org/10.1089/jayao.2015.0024.
Ellis SJ, Wakefield CE, McLoone JK, Robertson EG, Cohn RJ. Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis. J Psychosoc Oncol. 2016;34(5):347–62.
Carter J, Chi DS, Brown CL, Abu-Rustum NR, Sonoda Y, Aghajanian C, et al. Cancer-related infertility in survivorship. Int J Gynecol Cancer 2010;20(1):2-8. Epub 2010/02/05. doi: https://doi.org/10.1111/IGC.0b013e3181bf7d3f. PubMed PMID: 20130497.
Armuand GM, Rodriguez-Wallberg KA, Wettergren L, Ahlgren J, Enblad G, Hoglund M, et al. Sex differences in fertility-related information received by young adult cancer survivors. J Clin Oncol Off J Am Soc Clin Oncol 2012;30(17):2147-2153. Epub 2012/05/16. doi: https://doi.org/10.1200/JCO.2011.40.6470. PubMed PMID: 22585695.
Bibby H, White V, Thompson K, Anazodo A. What are the unmet needs and care experiences of adolescents and young adults with cancer? A systematic review. J Adolescent Young Adult Oncol. 2017;6(1):6–30. doi: https://doi.org/10.1089/jayao.2016.0012.
Chan JL, Letourneau J, Salem W, Cil AP, Chan SW, Chen LM, et al. Regret around fertility choices is decreased with pre-treatment counseling in gynecologic cancer patients. J Cancer Surviv. 2017;11(1):58–63. doi: https://doi.org/10.1007/s11764-016-0563-2.
Deshpande NA, Braun IM, Meyer FL. Impact of fertility preservation counseling and treatment on psychological outcomes among women with cancer: a systematic review. Cancer. 2015;121(22):3938–47. doi: https://doi.org/10.1002/cncr.29637.
Quinn GP, Vadaparampil ST. More research, more responsibility: the expansion of duty to warn in cancer patients considering fertility preservation. Am J Obstet Gynecol. 2013;209(2):98–102. doi: https://doi.org/10.1016/j.ajog.2013.02.031.
Vadaparampil S, Quinn GP. Improving communication between oncologists and reproductive specialists to promote timely referral of patients with cancer. J Oncol Practice. 2013;9(6):300–2. doi: https://doi.org/10.1200/jop.2013.001097.
Clinical Oncology Society of Australia. Fertility preservation for AYAs diagnosed with cancer: Guidance for health professionals 2014 [updated 6 June 2014 06:38:58]. Available from: http://wiki.cancer.org.au/australia/COSA:AYA_cancer_fertility_preservation/Introduction#Development_and_review_of_the_guidance.
Crawshaw M, Glaser AW, Hale JP, Sloper P. Young males' experiences of sperm banking following a cancer diagnosis-a qualitative study. Hum Fertil. 2008;11(4):238–45. CrossRef
Taylor JF, Ott MA. Fertility preservation after a cancer diagnosis: a systematic review of Adolescents', Parents', and providers’ perspectives, experiences, and preferences. J Pediatr Adolesc Gynecol. 2016;29(6):585–98. doi: https://doi.org/10.1016/j.jpag.2016.04.005.
Logan S, Perz J, Ussher J, Peate M, Anazodo A. Clinician provision of Oncofertility support in cancer patients of a reproductive age: a systematic review. Psycho-Oncology. 2017. doi: https://doi.org/10.1002/pon.4518.
Ussher JM, Cummings J, Dryden A, Perz J. Talking about fertility in the context of cancer: health care professional perspectives. European J Cancer Care. 2016;25(1):99–111. doi: https://doi.org/10.1111/ecc.12379.
Logan S, Perz J, Ussher J, Peate M, Anazodo A. A systematic review of patient Oncofertility support needs in reproductive cancer patients aged 14 to 45 years of age. Psycho-Oncology. 2017; doi: https://doi.org/10.1002/pon.4502.
Tschudin S, Bunting L, Abraham J, Gallop-Evans E, Fiander A, Boivin J. Correlates of fertility issues in an internet survey of cancer survivors. J Psychosom Obstet Gynecol. 2010;31(3):150–7. doi: https://doi.org/10.3109/0167482X.2010.503910.
Nakayama K, Liu P, Detry M, Schover LR, Milbourne A, Neumann J, et al. Receiving information on fertility- and menopause-related treatment effects among women who undergo hematopoietic stem cell transplantation: changes in perceived importance over time. Biol Blood Marrow Transplant 2009;15(11):1465-1474. Epub 2009/10/14. doi: https://doi.org/10.1016/j.bbmt.2009.07.019. PubMed PMID: 19822307.
Meneses K, McNees P, Azuero A, Jukkala A. Evaluation of the fertility and cancer project (FCP) among young breast cancer survivors. Psychooncology. 2010;19(10):1112-1115. doi: https://doi.org/10.1002/pon.1648. PubMed PMID: 2010-22622-012. PMID: 19918959. First author & affiliation: Meneses, Karen.
Benedict C, Thom B, Friedman ND, Diotallevi D, Pottenger ME, Raghunathan JN, et al. Young adult female cancer survivors' unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation. Cancer. 2016;122(13):2101–9. doi: https://doi.org/10.1002/cncr.29917.
Letourneau JM, Ebbel EE, Katz PP, Katz A, Ai WZ, Chien AJ, et al. Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer. Cancer 2012;118(6):1710-1717. Epub 2011/09/03. doi: https://doi.org/10.1002/cncr.26459. PubMed PMID: 21887678; PubMed Central PMCID: PMC3235264.
Goossens J, Delbaere I, Van Lancker A, Beeckman D, Verhaeghe S, Van Hecke A. Cancer patients’ and professional caregivers’ needs, preferences and factors associated with receiving and providing fertility-related information: a mixed-methods systematic review. Int J Nurs Stud. 2014;51(2):300–19. doi: https://doi.org/10.1016/j.ijnurstu.2013.06.015.
Quinn GP, Gon C, Alves V, Sehovic I, Bowman M, et al. Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Patient Related Outcome Measures. 2015;2015(default):19–51. CrossRef
Yeomanson DJ, Morgan S, Pacey AA. Discussing fertility preservation at the time of cancer diagnosis: dissatisfaction of young females. Pediatric Blood Cancer. 2013;60(12):1996–2000. doi: https://doi.org/10.1002/pbc.24672.
Peddie V, Porter M, Barbour R, Culligan D, Macdonald G, King D, et al. Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study. BJOG: An Int J Obstetrics Gynaecol. 2012;119(9):1049–57. doi: https://doi.org/10.1111/j.1471-0528.2012.03368.x.
Barlevy D, Wangmo T, Elger BS, Ravitsky V. Attitudes, beliefs, and trends regarding adolescent Oncofertility discussions: a systematic literature review. J Adolescent Young Adult Oncol. 2016;5(2):119–34. doi: https://doi.org/10.1089/jayao.2015.0055.
Zebrack B, Mills J, Weitzman T. Health and supportive care needs of young adult cancer patients and survivors. Res Practice. 2007;1(2):137–45. doi: https://doi.org/10.1007/s11764-007-0015-0.
Petropanagos A, Campo-Engelstein L. Tough talk: discussing fertility preservation with adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2015;4(3):96–9. doi: https://doi.org/10.1089/jayao.2014.0047.
Crawshaw MA, Sloper P. ‘Swimming against the tide’– the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer. European J Cancer Care. 2010;19(5):610–20. doi: https://doi.org/10.1111/j.1365-2354.2009.01118.x.
Armuand GM, Wettergren L, Rodriguez-Wallberg KA, Lampic C. Women more vulnerable than men when facing risk for treatment-induced infertility: a qualitative study of young adults newly diagnosed with cancer. Acta Oncol. 2015;54(2):243–52. doi: https://doi.org/10.3109/0284186X.2014.948573.
Lee RJ, Wakefield A, Foy S, Howell SJ, Wardley AM, Armstrong AC. Facilitating reproductive choices: the impact of health services on the experiences of young women with breast cancer. Psycho-Oncology 2011;20(10):1044-1052. Epub 2010/09/08. doi: https://doi.org/10.1002/pon.1826. PubMed PMID: 20818600.
Edge B, Holmes D, Makin G. Sperm banking in adolescent cancer patients. Arch Dis Child. 2006;91(2):149. doi: https://doi.org/10.1136/adc.2005.075242.
Green D, Galvin H, Horne B. The psycho-social impact of infertility on young male cancer survivors: a qualitative investigation. Psycho-Oncology. 2003;12(2):141-152. doi: https://doi.org/10.1002/pon.622. PubMed PMID: 2003-03133-006. PMID: 12619146. First Author & Affiliation: Green, David.
Schmidt R, Richter D, Sender A, Geue K. Motivations for having children after cancer - a systematic review of the literature. European J Cancer Care. 2016;25(1):6–17. doi: https://doi.org/10.1111/ecc.12276.
Crawshaw M. Male coping with cancer-fertility issues: putting the ‘social’ into biopsychosocial approaches. Reprod BioMed Online. 2013;27(3):261–70. doi: https://doi.org/10.1016/j.rbmo.2013.04.017.
Stern K. Protection and preservation of fertility for young women with cancer. Obstet Gynaecol. 2010;12(3):22–5.
Kvale S, Brinkmann S. Interviews: learning the craft of qualitative research interviewing. 2nd ed. Los Angeles, CA: Sage; 2009.
Braun V, Clarke B. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi: https://doi.org/10.1191/1478088706qp063oa.
Patton MQ. Qualitative evalauation and research methods. Newbury Park, CA: Sage; 2002.
Bandura A. Self-efficacy mechanism in human agency. Am Psychol. 1982;37(2):122–47. doi: https://doi.org/10.1037/0003-066X.37.2.122.
Folkman S. Personal control and stress and coping processes: a theoretical analysis. J Pers Soc Psychol. 1984;46(4):839–52. doi: https://doi.org/10.1037/0022-35220.127.116.119.
Luszczynska A, Mohamed NE, Schwarzer R. Self-efficacy and social support predict benefit finding 12 months after cancer surgery: the mediating role of coping strategies. Psychol Health Med. 2005;10(4):365–75. doi: https://doi.org/10.1080/13548500500093738.
Adams RJ. Improving health outcomes with better patient understanding and education. Risk Manage Healthc Policy. 2010;3:61–72. doi: https://doi.org/10.2147/RMHP.S7500.
Peate M, Meiser B, Hickey M, Friedlander M. The fertility-related concerns, needs and preferences of younger women with breast cancer: a systematic review. Breast Cancer Res Treat. 2009;116(2):215–23. doi: https://doi.org/10.1007/s10549-009-0401-6.
Rey D, Provansal M, Courbiere B, Spire B, Mancini J. Satisfaction with fertility- and sexuality-related information in young women with breast cancer-ELIPPSE40 cohort. BMC Cancer. 2015;15
Komatsu H, Yagasaki K, Shoda R, Chung Y, Iwata T, Sugiyama J, et al. Repair of the threatened feminine identity: experience of women with cervical cancer undergoing fertility preservation surgery. Cancer Nurs. 2014;37(1):75–82. doi: https://doi.org/10.1097/NCC.0b013e3182888c13.
Kirkman M, Stern C, Neil S, Winship I, Mann GB, Shanahan K, et al. Fertility management after breast cancer diagnosis: a qualitative investigation of Women's experiences of and recommendations for professional care. Health Care Women Int. 2012;34(1):50–67. doi: https://doi.org/10.1080/07399332.2012.735729.
Peate M, Meiser B, Friedlander M, Saunders C, Martinello R, Wakefield CE, et al. Development and pilot testing of a fertility decision aid for young women diagnosed with early breast cancer: LETTER TO THE EDITOR. Breast J. 2011;17(1):112–4. doi: https://doi.org/10.1111/j.1524-4741.2010.01033.x.
Fallowfield L, Jenkins V. Effective communication skills are a key to good cancer care. European J Cancer Care. 1999;35:1592–7. CrossRef
Hart SL, Latini DM, Cowan JE, Carroll PR, Cochran JS, Kane CJ, et al. Fear of recurrence, treatment satisfaction, and quality of life after radical prostatectomy for prostate cancer. Support Care Cancer. 2008;16(2):161–9. doi: https://doi.org/10.1007/s00520-007-0296-x.
Forman EJ, Anders CK, Behera MA. A nationwide survey of oncologists regarding treatment-related infertility and fertility preservation in female cancer patients. Fertil Steril 2010;94(5):1652-1656. Epub 2009/12/01. doi: https://doi.org/10.1016/j.fertnstert.2009.10.008. PubMed PMID: 19945099.
McQuillan SK, Malenfant D, Jayasinghe YL, Orme LM, Grover SR. Audit of current fertility preservation strategies used by individual pediatric oncologists throughout Australia and New Zealand. J Pediatr Oncol. 2013;1(2):112–8.
Oh YS. Communications with health professionals and psychological distress in family caregivers to cancer patients: a model based on stress-coping theory. Appl Nurs Res. 2017;33:5–9. doi: https://doi.org/10.1016/j.apnr.2016.09.008.
Ransom S, Jacobsen PB, Schmidt JE, Andrykowski MA. Relationship of problem-focused coping strategies to changes in quality of life following treatment for early stage breast cancer. J Pain Symptom Manag. 2005;30(3):243–53. doi: https://doi.org/10.1016/j.jpainsymman.2005.03.013.
Quinn GP, Vadaparampil ST. Fertility preservation and adolescent/young adult cancer patients: physician communication challenges. J Adolesc Health. 2009;44(4):394–400. doi: https://doi.org/10.1016/j.jadohealth.2008.08.014.
Quinn GP, Vadaparampil ST, Bell-Ellison BA, Gwede CK, Albrecht TL. Patient–physician communication barriers regarding fertility preservation among newly diagnosed cancer patients. Soc Sci Med. 2008;66(3):784–9. doi: https://doi.org/10.1016/j.socscimed.2007.09.013.
Bolaji II, Saha A, KyS S. Reproductive challenges in young female cancer patients. J Reprod Contracept. 2014;25(4):241–57. doi: https://doi.org/10.7669/j.issn.1001-7844.2014.04.0241.
Greil AL, Slauson-Blevins K, McQuillan J. The experience of infertility: a review of recent literature. Soc Health Illness 2010;32(1):140-162. Epub 2009/12/17. doi: https://doi.org/10.1111/j.1467-9566.2009.01213.x. PubMed PMID: 20003036; PubMed Central PMCID: PMC3383794.
Ulrich M, Weatherall A. Motherhood and infertility: viewing motherhood through the lens of infertility. Feminism Psychol. 2000;10(3):323–36. CrossRef
Throsby K, Gill R. "It's different for men": masculinity and IVF. Men Masculinities. 2004;6(4):330–48. CrossRef
Barbour RS, Porter MA, Peddie VL, Bhattacharya S. Counselling in the context of fertility and cancer: some sociological insights. Hum Fertil (Camb) 2013;16(1):54-58. Epub 2013/03/21. doi: https://doi.org/10.3109/14647273.2013.775512. PubMed PMID: 23509856.
- Need for information, honesty and respect: patient perspectives on health care professionals communication about cancer and fertility
Jane M. Ussher
- BioMed Central
Neu im Fachgebiet Gynäkologie und Geburtshilfe
Meistgelesene Bücher aus dem Fachgebiet
Mail Icon II