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Published in: Reproductive Health 1/2018

Open Access 01-12-2018 | Research

Need for information, honesty and respect: patient perspectives on health care professionals communication about cancer and fertility

Authors: Jane M. Ussher, Chloe Parton, Janette Perz

Published in: Reproductive Health | Issue 1/2018

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Abstract

Background

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.

Method

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.

Results

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.

Conclusion

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.
Literature
2.
go back to reference Reis N, Beji NK, Coskun A. Quality of life and sexual functioning in gynecological cancer patients: results from quantitative and qualitative data. Eur J Oncol Nurs. 2010;14(2):137–46.CrossRefPubMed Reis N, Beji NK, Coskun A. Quality of life and sexual functioning in gynecological cancer patients: results from quantitative and qualitative data. Eur J Oncol Nurs. 2010;14(2):137–46.CrossRefPubMed
3.
go back to reference 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. 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.
6.
go back to reference Zebrack B, Casillas J, Nohr L, Adams H, Zeltzer LK. Fertility issues for young adult survivors of childhood cancer. Psycho-Oncology. 2004;13(10):689–99.CrossRefPubMed Zebrack B, Casillas J, Nohr L, Adams H, Zeltzer LK. Fertility issues for young adult survivors of childhood cancer. Psycho-Oncology. 2004;13(10):689–99.CrossRefPubMed
7.
go back to reference Tschudin S, Bitzer J. Psychological aspects of fertility preservation in men and women affected by cancer and other life-threatening diseases. Hum Reprod Update. 2009;15(5):587–97.CrossRefPubMed Tschudin S, Bitzer J. Psychological aspects of fertility preservation in men and women affected by cancer and other life-threatening diseases. Hum Reprod Update. 2009;15(5):587–97.CrossRefPubMed
8.
14.
go back to reference Gonçalves V, Tarrier N, Quinn GP. Thinking about white bears: fertility issues in young breast cancer survivors. Patient Educ Couns. 2015;98(1):125–6.CrossRefPubMed Gonçalves V, Tarrier N, Quinn GP. Thinking about white bears: fertility issues in young breast cancer survivors. Patient Educ Couns. 2015;98(1):125–6.CrossRefPubMed
15.
go back to reference Loren AW, Mangu PB, Beck LN, Brennan L, Magdalinski AJ, Partridge AH, et al. Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2013;31(19):2500–10.CrossRefPubMedPubMedCentral Loren AW, Mangu PB, Beck LN, Brennan L, Magdalinski AJ, Partridge AH, et al. Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2013;31(19):2500–10.CrossRefPubMedPubMedCentral
17.
go back to reference 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 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
18.
go back to reference Davis M. Fertility considerations for female Adoelscent and young adult patients following cancer therapy: a guide for counseling patients and their families. Clin J Oncol Nurs. 2006;10(2):213–9.CrossRefPubMed Davis M. Fertility considerations for female Adoelscent and young adult patients following cancer therapy: a guide for counseling patients and their families. Clin J Oncol Nurs. 2006;10(2):213–9.CrossRefPubMed
20.
go back to reference Loscalzo MJ, Clark KL. The psychosocial context of cancer-related infertility. Cancer Treat Res. 2007;138:180–90. Epub 2007/12/18. PubMed PMID: 18080665CrossRefPubMed Loscalzo MJ, Clark KL. The psychosocial context of cancer-related infertility. Cancer Treat Res. 2007;138:180–90. Epub 2007/12/18. PubMed PMID: 18080665CrossRefPubMed
22.
go back to reference King L, Quinn G, Vadaparampil S, Gwede C, Miree C, Wilson C, et al. Oncology Nurses' perceptions of barriers to discussion of fertility preservation with patients with cancer. Clin J Oncol Nurs. 2008;12(3):467–76.CrossRefPubMed King L, Quinn G, Vadaparampil S, Gwede C, Miree C, Wilson C, et al. Oncology Nurses' perceptions of barriers to discussion of fertility preservation with patients with cancer. Clin J Oncol Nurs. 2008;12(3):467–76.CrossRefPubMed
23.
go back to reference Quinn GP, Vadaparampil ST, King L, Miree CA, Wilson C, Raj O, et al. Impact of physicians' personal discomfort and patient prognosis on discussion of fertility preservation with young cancer patients. Patient Educ Couns. 2009;77(3):338–43.CrossRefPubMed Quinn GP, Vadaparampil ST, King L, Miree CA, Wilson C, Raj O, et al. Impact of physicians' personal discomfort and patient prognosis on discussion of fertility preservation with young cancer patients. Patient Educ Couns. 2009;77(3):338–43.CrossRefPubMed
25.
27.
go back to reference 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. 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.
28.
go back to reference 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. 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.
29.
go back to reference 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. 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.
30.
31.
go back to reference 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. 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.
32.
go back to reference 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 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
40.
go back to reference 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. 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.
42.
go back to reference Chapple A, Salinas M, Ziebland S, McPherson A, Macfarlane A. Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer. J Adolesc Health. 2007;40(1):69–75.CrossRefPubMed Chapple A, Salinas M, Ziebland S, McPherson A, Macfarlane A. Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer. J Adolesc Health. 2007;40(1):69–75.CrossRefPubMed
43.
go back to reference Schover LR, Brey K, Lichtin A, Lipshultz LI, Jeha S. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. J Clin Oncol. 2002;20(7):1880–9.CrossRefPubMed Schover LR, Brey K, Lichtin A, Lipshultz LI, Jeha S. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. J Clin Oncol. 2002;20(7):1880–9.CrossRefPubMed
44.
go back to reference 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. 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.
47.
go back to reference Stern K. Protection and preservation of fertility for young women with cancer. Obstet Gynaecol. 2010;12(3):22–5. Stern K. Protection and preservation of fertility for young women with cancer. Obstet Gynaecol. 2010;12(3):22–5.
48.
go back to reference Kvale S, Brinkmann S. Interviews: learning the craft of qualitative research interviewing. 2nd ed. Los Angeles, CA: Sage; 2009. Kvale S, Brinkmann S. Interviews: learning the craft of qualitative research interviewing. 2nd ed. Los Angeles, CA: Sage; 2009.
50.
go back to reference Patton MQ. Qualitative evalauation and research methods. Newbury Park, CA: Sage; 2002. Patton MQ. Qualitative evalauation and research methods. Newbury Park, CA: Sage; 2002.
56.
go back to reference 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 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
58.
go back to reference 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. 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.
60.
go back to reference Fallowfield L, Jenkins V. Effective communication skills are a key to good cancer care. European J Cancer Care. 1999;35:1592–7.CrossRef Fallowfield L, Jenkins V. Effective communication skills are a key to good cancer care. European J Cancer Care. 1999;35:1592–7.CrossRef
61.
go back to reference Lindau ST, Surawska H, Paice J, Baron SR. Communication about sexuality and intimacy in couples affected by lung cancer and their clinical-care providers. Psychooncology. 2011;20:179–85.CrossRefPubMedPubMedCentral Lindau ST, Surawska H, Paice J, Baron SR. Communication about sexuality and intimacy in couples affected by lung cancer and their clinical-care providers. Psychooncology. 2011;20:179–85.CrossRefPubMedPubMedCentral
62.
63.
go back to reference Letourneau JM, Smith JF, Ebbel EE, Craig A, Katz PP, Cedars MI, et al. Racial, socioeconomic, and demographic disparities in access to fertility preservation in young women diagnosed with cancer. Cancer. 2012;118(18):4579–88.CrossRefPubMedPubMedCentral Letourneau JM, Smith JF, Ebbel EE, Craig A, Katz PP, Cedars MI, et al. Racial, socioeconomic, and demographic disparities in access to fertility preservation in young women diagnosed with cancer. Cancer. 2012;118(18):4579–88.CrossRefPubMedPubMedCentral
65.
go back to reference Shimizu C, Bando H, Kato T, Mizota Y, Yamamoto S, Fujiwara Y. Physicians’ knowledge, attitude, and behavior regarding fertility issues for young breast cancer patients: a national survey for breast care specialists. Breast Cancer. 2013;20(3):230–40.CrossRefPubMed Shimizu C, Bando H, Kato T, Mizota Y, Yamamoto S, Fujiwara Y. Physicians’ knowledge, attitude, and behavior regarding fertility issues for young breast cancer patients: a national survey for breast care specialists. Breast Cancer. 2013;20(3):230–40.CrossRefPubMed
66.
go back to reference 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. 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.
67.
69.
go back to reference Ussher JM, Kirsten L, Butow P, Sandoval M. What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Soc Sci Med. 2006;62:2565–76.CrossRefPubMed Ussher JM, Kirsten L, Butow P, Sandoval M. What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Soc Sci Med. 2006;62:2565–76.CrossRefPubMed
73.
go back to reference Penrose R, Beatty L, Mattiske J, Koczwara B. Fertility and cancer—a qualitative study of Australian cancer survivors. Support Care Cancer. 2012;20(6):1259–65.CrossRefPubMed Penrose R, Beatty L, Mattiske J, Koczwara B. Fertility and cancer—a qualitative study of Australian cancer survivors. Support Care Cancer. 2012;20(6):1259–65.CrossRefPubMed
78.
go back to reference Ulrich M, Weatherall A. Motherhood and infertility: viewing motherhood through the lens of infertility. Feminism Psychol. 2000;10(3):323–36.CrossRef Ulrich M, Weatherall A. Motherhood and infertility: viewing motherhood through the lens of infertility. Feminism Psychol. 2000;10(3):323–36.CrossRef
79.
go back to reference Gurevich M, Bishop S, Bower J, Malka M, Nyhof-Young J. (Dis)embodying gender and sexuality in testicular cancer. Soc Sci Med. 2004;58(9):1597–607.CrossRefPubMed Gurevich M, Bishop S, Bower J, Malka M, Nyhof-Young J. (Dis)embodying gender and sexuality in testicular cancer. Soc Sci Med. 2004;58(9):1597–607.CrossRefPubMed
80.
go back to reference Throsby K, Gill R. "It's different for men": masculinity and IVF. Men Masculinities. 2004;6(4):330–48.CrossRef Throsby K, Gill R. "It's different for men": masculinity and IVF. Men Masculinities. 2004;6(4):330–48.CrossRef
82.
go back to reference Nagel K, Cassano J, Wizowski L, Neal MS. Collaborative multidisciplinary team approach to fertility issues among adolescent and young adult cancer patients. Int J Nurs Pract. 2009;15(4):311–7.CrossRefPubMed Nagel K, Cassano J, Wizowski L, Neal MS. Collaborative multidisciplinary team approach to fertility issues among adolescent and young adult cancer patients. Int J Nurs Pract. 2009;15(4):311–7.CrossRefPubMed
Metadata
Title
Need for information, honesty and respect: patient perspectives on health care professionals communication about cancer and fertility
Authors
Jane M. Ussher
Chloe Parton
Janette Perz
Publication date
01-12-2018
Publisher
BioMed Central
Published in
Reproductive Health / Issue 1/2018
Electronic ISSN: 1742-4755
DOI
https://doi.org/10.1186/s12978-017-0441-z

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