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COSA guidelines for fertility preservation for people with cancer
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Discussing Risk
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Health professional awareness

Health professional awareness

Health professional awareness

Clinical Question One

How aware are health professionals of the need to discuss the risk of infertility with people diagnosed with cancer?

The level of awareness among health professionals of the need to discuss the risk of infertility varies widely.[1] In Germany and America almost all oncologists and oncology nurses surveyed thought it was important to discuss oncofertility,[2][3][4] while less than half of clinicians in small surveys in Hong Kong and Iran were familiar with fertility preservation techniques.[5][6]

Despite awareness, many clinicians have a poor understanding of fertility preservation options available to patients diagnosed with cancer [2] and the risk of permanent amenorrhea for female cancer patients.[3] A systematic review of 14 studies from the USA, United Kingdom, Canada, the Netherlands and Australia, found that health care professionals knowledge of fertility preservation was a significant barrier to discussing options with patients.[1][7] In addition the impact of cancer therapies on ovarian function is infrequently assessed in clinical trials.(Cui 2021)

Evidence Summary One

Evidence summaryLevelReferences
There is a wide variation in the awareness of health care professionals of the need for timely fertility discussion with people diagnosed with cancer. The lack of knowledge of current fertility preservation options is a barrier to this discussion.IV[2], [3], [4], [6], [5], [3], [7]


Recommendation One

Evidence-based recommendationGrade
Continuing education for health professionals about reproductive health, risk of infertility and fertility preservation options available for patients with cancer is essential.C


Clinical Question Two

Do all patients with cancer receive the opportunity to have a discussion with a health professional about the risk of infertility?

A review of medical records of adolescent and young adult patients with cancer in Australia identified 47% of patients had a documented fertility discussion,[8] while other studies found documented fertility discussion rates ranged from 16-80%.[9][10][11][12][13][14][15][16]

Studies have also evaluated patient recall of discussions about fertility. A systematic review by Tschudin et al found that rates of recall of fertility counselling by patients with cancer ranged from 34% to 72%.[17] This was reflected in other studies of patient recall which ranged from 34% to 88%.[18][19][20][21][22][23][24][25]

Studies of paediatric oncologists and families in Australian and New Zealand found that fertility discussions were less likely to occur for patients below the age of 12 years compared to older patients and for those at lower risk of infertility.[26] There is a need to improve documentation of discussions.[11] The timing and quality of conversations are also important as they influence decision-making in regards to treatment and fertility preservation.[27][20][12][9][13][17] Discussions that feel rushed without providing time to adequately address fertility needs, or those occurring after the commencement of therapy (even if low risk to fertility), significantly increases regret.[27]

Evidence Summary Two

Evidence summaryLevelReferences
Despite international guidelines mandating discussion of infertility risk and provision of information prior to cancer treatment, this is not routinely performed as part of early cancer management. Documentation of fertility discussions is poor, hindering accurate reporting.IV[26], [25], [8], [22], [18], [19], [20], [21], [23], [17], [9], [11]

Recommendation Two

Evidence-based recommendationGrade
Fertility discussions should be implemented as part of the routine cancer plan for all patients. These discussions should be documented in the patient’s medical records. Age-appropriate materials should be provided to patients to assist with retention of information and for later reference.C


References

  1. Anazodo A, Laws P, Logan S, Saunders C, Travaglia J, Gerstl B, et al. How can we improve oncofertility care for patients? A systematic scoping review of current international practice and models of care. Hum Reprod Update 2018 Nov 20 Available from: http://www.ncbi.nlm.nih.gov/pubmed/30462263.
  2. Buske D, Sender A, Richter D, Brähler E, Geue K. Patient-Physician Communication and Knowledge Regarding Fertility Issues from German Oncologists' Perspective-a Quantitative Survey. J Cancer Educ 2016 Mar;31(1):115-22 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25934223.
  3. 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 Oct;94(5):1652-6 Available from: http://www.ncbi.nlm.nih.gov/pubmed/19945099.
  4. Vadaparampil ST, Clayton H, Quinn GP, King LM, Nieder M, Wilson C. Pediatric oncology nurses' attitudes related to discussing fertility preservation with pediatric cancer patients and their families. J Pediatr Oncol Nurs 2007 Sep;24(5):255-63 Available from: http://www.ncbi.nlm.nih.gov/pubmed/17827491.
  5. Ghorbani B, Madahi P, Shirazi E, Ardekani HS, Kamali K. Iranian Oncologists' Attitude towards Fertility Preservation in a Sample Group. J Reprod Infertil 2011 Jan;12(1):33-6 Available from: http://www.ncbi.nlm.nih.gov/pubmed/23926497.
  6. Chung JP, Lao TT, Li TC. Evaluation of the awareness of, attitude to, and knowledge about fertility preservation in cancer patients among clinical practitioners in Hong Kong. Hong Kong Med J 2017 Dec;23(6):556-61 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29123075.
  7. Vindrola-Padros C, Dyer KE, Cyrus J, Lubker IM. Healthcare professionals' views on discussing fertility preservation with young cancer patients: a mixed method systematic review of the literature. Psychooncology 2017 Jan;26(1):4-14 Available from: http://www.ncbi.nlm.nih.gov/pubmed/26890220.
  8. Skaczkowski G, White V, Thompson K, Bibby H, Coory M, Orme LM, et al. Factors influencing the provision of fertility counseling and impact on quality of life in adolescents and young adults with cancer. J Psychosoc Oncol 2018 Jul;36(4):484-502 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29764330.
  9. Wang Y, Chen L, Ruan JY, Cheung WY. Discussions about reproductive and sexual health among young adult survivors of cancer. Cancer Med 2016 Jun;5(6):1037-46 Available from: http://www.ncbi.nlm.nih.gov/pubmed/26899556.
  10. Takahashi Y, Shien T, Sakamoto A, Tsuyumu Y, Yoshioka R, Uno M, et al. Current Multidisciplinary Approach to Fertility Preservation for Breast Cancer Patients. Acta Med Okayama 2018 Apr;72(2):137-142 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29674762.
  11. Quinn GP, Block RG, Clayman ML, Kelvin J, Arvey SR, Lee J, et al. If You Did Not Document It, It Did Not Happen: Rates of Documentation of Discussion of Infertility Risk in Adolescent and Young Adult Oncology Patients' Medical Records. J Oncol Pract 2014 Dec 30 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25549654.
  12. Kumar A, Merali A, Pond GR, Zbuk K. Fertility risk discussions in young patients diagnosed with colorectal cancer. Curr Oncol 2012 Jun;19(3):155-9 Available from: http://www.ncbi.nlm.nih.gov/pubmed/22670094.
  13. Roche BM, Mazanec SR, Toly VB, Pateva I. Addressing Fertility in Adolescent and Young Adult Oncology Patients: A Descriptive Study. J Adolesc Young Adult Oncol 2018 Aug 29 Available from: http://www.ncbi.nlm.nih.gov/pubmed/30156439.
  14. Banerjee R, Tsiapali E. Occurrence and recall rates of fertility discussions with young breast cancer patients. Support Care Cancer 2016 Jan;24(1):163-71 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25967235.
  15. Rentea RM, Poola AS, Fulbright JM, St Peter SD, Shah SR. Utility of pediatric female fertility preservation discussions following pelvic radiation. Pediatr Surg Int 2018 Jun;34(6):647-651 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29619566.
  16. McCray DK, Simpson AB, Flyckt R, Liu Y, O'Rourke C, Crowe JP, et al. Fertility in Women of Reproductive Age After Breast Cancer Treatment: Practice Patterns and Outcomes. Ann Surg Oncol 2016 Oct;23(10):3175-81 Available from: http://www.ncbi.nlm.nih.gov/pubmed/27334218.
  17. Tschudin S, Bitzer J. Psychological aspects of fertility preservation in men and women affected by cancer and other life-threatening diseases. Hum Reprod 2009;Update 15(5):587-59.
  18. Hohmann C, Borgmann-Staudt A, Rendtorff R, Reinmuth S, Holzhausen S, Willich SN, et al. Patient counselling on the risk of infertility and its impact on childhood cancer survivors: results from a national survey. J Psychosoc Oncol 2011;29(3):274-85 Available from: http://www.ncbi.nlm.nih.gov/pubmed/21590573.
  19. Niemasik EE, Letourneau J, Dohan D, Katz A, Melisko M, Rugo H, et al. Patient perceptions of reproductive health counseling at the time of cancer diagnosis: a qualitative study of female California cancer survivors. J Cancer Surviv 2012 Sep;6(3):324-32 Available from: http://www.ncbi.nlm.nih.gov/pubmed/22752834.
  20. Partridge AH, Gelber S, Peppercorn J, Sampson E, Knudsen K, Laufer M, et al. Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol 2004 Oct 15;22(20):4174-83 Available from: http://www.ncbi.nlm.nih.gov/pubmed/15483028.
  21. Shnorhavorian M, Harlan LC, Smith AW, Keegan TH, Lynch CF, Prasad PK, et al. Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study. Cancer 2015 Oct 1;121(19):3499-506 Available from: http://www.ncbi.nlm.nih.gov/pubmed/26214755.
  22. Skaczkowski G, White V, Thompson K, Bibby H, Coory M, Pinkerton R, et al. Factors influencing the documentation of fertility-related discussions for adolescents and young adults with cancer. Eur J Oncol Nurs 2018 Jun;34:42-48 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29784137.
  23. Duffy CM, Allen SM, Clark MA. Discussions regarding reproductive health for young women with breast cancer undergoing chemotherapy. J Clin Oncol 2005 Feb 1;23(4):766-73 Available from: http://www.ncbi.nlm.nih.gov/pubmed/15681520.
  24. Geue K, Richter D, Schmidt R, Sender A, Siedentopf F, Brähler E, et al. The desire for children and fertility issues among young German cancer survivors. J Adolesc Health 2014 May;54(5):527-35 Available from: http://www.ncbi.nlm.nih.gov/pubmed/24315429.
  25. Salem WH, Letourneau JM, Chan J, Chan SW, Cedars M, Rosen MP. Cancer survivors of gynecologic malignancies are at risk for decreased opportunity for fertility preservation. Contracept Reprod Med 2017;2:12 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29201417.
  26. Anderson RA, Weddell A, Spoudeas HA, Douglas C, Shalet SM, Levitt G, et al. Do doctors discuss fertility issues before they treat young patients with cancer? Hum Reprod 2008 Oct;23(10):2246-51 Available from: http://www.ncbi.nlm.nih.gov/pubmed/18614615.
  27. Jayasuriya S, Peate M, Allingham C, Li N, Gillam L, Zacharin M, et al. Satisfaction, disappointment and regret surrounding fertility preservation decisions in the paediatric and adolescent cancer population. J Assist Reprod Genet 2019 Sep;36(9):1805-1822 Available from: http://www.ncbi.nlm.nih.gov/pubmed/31399917.

Body of Evidence One

What is the level of awareness among health professionals of the need to discuss the risk of infertility with cancer patients?

CitationLevel of EvidenceQuality of EvidenceSize of EffectNumber of PatientsRelevance of Evidence
Buske D, Sender A, Richter D, Brähler E, Geue K. Patient-Physician Communication and Knowledge Regarding Fertility Issues from German Oncologists' Perspective-a Quantitative Survey. J Cancer Educ 2016 Mar;31(1):115-22 Available from:http://www.ncbi.nlm.nih.gov/pubmed/25934223IVLowN/A120N/A
Chung JP, Lao TT, Li TC. Evaluation of the awareness of, attitude to, and knowledge about fertility preservation in cancer patients among clinical practitioners in Hong Kong. Hong Kong Med J 2017 Dec;23(6):556-61 Available from:http://www.ncbi.nlm.nih.gov/pubmed/29123075IVLowN/A167N/A
de Vries MC, Bresters D, Engberts DP, Wit JM, van Leeuwen E. Attitudes of physicians and parents towards discussing infertility risks and semen cryopreservation with male adolescents diagnosed with cancer. Pediatr Blood Cancer 2009 Sep;53(3):386-91 Available from:http://www.ncbi.nlm.nih.gov/pubmed/19489059IVLowN/A15N/A
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 Oct;94(5):1652-6 Available from:http://www.ncbi.nlm.nih.gov/pubmed/19945099IVLowN/A249N/A
Ghorbani B, Madahi P, Shirazi E, Ardekani HS, Kamali K. Iranian Oncologists' Attitude towards Fertility Preservation in a Sample Group. J Reprod Infertil 2011 Jan;12(1):33-6 Available from:http://www.ncbi.nlm.nih.gov/pubmed/23926497IVLowN/A30N/A
Gwede CK, Vadaparampil ST, Hoffe S, Quinn GP. The role of radiation oncologists and discussion of fertility preservation in young cancer patients. Pract Radiat Oncol 2012 Oct;2(4):242-247 Available from:http://www.ncbi.nlm.nih.gov/pubmed/24674159IVLowN/A238N/A
Schover LR, Brey K, Lichtin A, Lipshultz LI, Jeha S. Oncologists' attitudes and practices regarding banking sperm before cancer treatment. J Clin Oncol 2002 Apr 1;20(7):1890-7 Available from:http://www.ncbi.nlm.nih.gov/pubmed/11919249IVLowN/A162N/A
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 Jul;20(3):230-40 Available from:http://www.ncbi.nlm.nih.gov/pubmed/22271066IVLowN/A434N/A
Vadaparampil ST, Clayton H, Quinn GP, King LM, Nieder M, Wilson C. Pediatric oncology nurses' attitudes related to discussing fertility preservation with pediatric cancer patients and their families. J Pediatr Oncol Nurs 2007 Sep;24(5):255-63 Available from:http://www.ncbi.nlm.nih.gov/pubmed/17827491IVLowN/A126N/A
Vindrola-Padros C, Dyer KE, Cyrus J, Lubker IM. Healthcare professionals' views on discussing fertility preservation with young cancer patients: a mixed method systematic review of the literature. Psychooncology 2017 Jan;26(1):4-14 Available from:http://www.ncbi.nlm.nih.gov/pubmed/26890220IVMediumN/A16N/A

Body of Evidence Two

What proportion of cancer patients have a discussion regarding the risk of infertility with a health professional?

CitationLevel of EvidenceQuality of EvidenceSize of EffectNumber of PatientsRelevance of Evidence
Anderson RA, Weddell A, Spoudeas HA, Douglas C, Shalet SM, Levitt G, et al. Do doctors discuss fertility issues before they treat young patients with cancer? Hum Reprod 2008 Oct;23(10):2246-51 Available from: http://www.ncbi.nlm.nih.gov/pubmed/18614615IVMediumN/A1,030N/A
Banerjee R, Tsiapali E. Occurrence and recall rates of fertility discussions with young breast cancer patients. Support Care Cancer 2016 Jan;24(1):163-71 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25967235IVLowN/A49N/A
Duffy CM, Allen SM, Clark MA. Discussions regarding reproductive health for young women with breast cancer undergoing chemotherapy. J Clin Oncol 2005 Feb 1;23(4):766-73 Available from: http://www.ncbi.nlm.nih.gov/pubmed/15681520IVMediumN/A166N/A
Geue K, Richter D, Schmidt R, Sender A, Siedentopf F, Brähler E, et al. The desire for children and fertility issues among young German cancer survivors. J Adolesc Health 2014 May;54(5):527-35 Available from: http://www.ncbi.nlm.nih.gov/pubmed/24315429IVLowN/A149N/A
Hohmann C, Borgmann-Staudt A, Rendtorff R, Reinmuth S, Holzhausen S, Willich SN, et al. Patient counselling on the risk of infertility and its impact on childhood cancer survivors: results from a national survey. J Psychosoc Oncol 2011;29(3):274-85 Available from: http://www.ncbi.nlm.nih.gov/pubmed/21590573IVMediumN/A2,754N/A
Kumar A, Merali A, Pond GR, Zbuk K. Fertility risk discussions in young patients diagnosed with colorectal cancer. Curr Oncol 2012 Jun;19(3):155-9 Available from: http://www.ncbi.nlm.nih.gov/pubmed/22670094IVLowN/A59N/A
McCray DK, Simpson AB, Flyckt R, Liu Y, O'Rourke C, Crowe JP, et al. Fertility in Women of Reproductive Age After Breast Cancer Treatment: Practice Patterns and Outcomes. Ann Surg Oncol 2016 Oct;23(10):3175-81 Available from: http://www.ncbi.nlm.nih.gov/pubmed/27334218IVLow53032
Niemasik EE, Letourneau J, Dohan D, Katz A, Melisko M, Rugo H, et al. Patient perceptions of reproductive health counseling at the time of cancer diagnosis: a qualitative study of female California cancer survivors. J Cancer Surviv 2012 Sep;6(3):324-32 Available from: http://www.ncbi.nlm.nih.gov/pubmed/22752834IVMediumN/A1,041N/A
Partridge AH, Gelber S, Peppercorn J, Sampson E, Knudsen K, Laufer M, et al. Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol 2004 Oct 15;22(20):4174-83 Available from: http://www.ncbi.nlm.nih.gov/pubmed/15483028IVMediumN/A657N/A
Quinn GP, Block RG, Clayman ML, Kelvin J, Arvey SR, Lee J, et al. If You Did Not Document It, It Did Not Happen: Rates of Documentation of Discussion of Infertility Risk in Adolescent and Young Adult Oncology Patients' Medical Records. J Oncol Pract 2014 Dec 30 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25549654IVMediumN/A231N/A