Clinical Guidelines

MENU

Fertility preservation for people with cancer

Referral rates and decisional conflict

Clinical question

Are cancer patients routinely referred to fertility preservation specialists? Are patients who are referred for fertility preservation discussion less likely to suffer decisional conflict?

With expanding awareness of fertility preservation for patients with cancer, the rate of referral of cancer patients to fertility services is increasing. In one study of breast cancer patients under the age of 45, the referral rate went from zero to 95% over a ten year period.[1] Other studies have also observed an increase in referral rates.[2][3]

However, rates of referral are highly variable across centres, tumour types, ages of patients and clinicians type.[3] In a German study, only one in three patients under the age of 45 who spoke with their oncologist about fertility also spoke with a fertility specialist about their concerns.[4] Only 20% of women diagnosed with cancer who were eligible for a fertility preservation consultation at a North Carolina institution were referred.[5] In a similar study, only 29% of reproductive-aged male patients with cancer received fertility counselling.[6] Rates were even lower in other studies; 9.8% of patients referred for fertility preservation counselling,[7] 13% of patients referred to a fertility specialist,[8] and 26% of female patients with cancer consulted a fertility specialist.[9] Most of the studies mentioned above are small (100 to 300 patients) and many only involved one institution. Despite this risk of bias, it is clear that patients are missing out on being referred to fertility preservation services.

Most studies have shown that younger age increases the likelihood of referral to a fertility preservation specialist.[5][6][8] In one study of young cancer patients 15 to 24 years of age at diagnosis, 59% were offered a referral to a fertility specialist.[10] Parity also influenced the rate of referral, with the rate being higher for nulliparous patients,[5] and lower for those who already had children.[8]

A patient’s desire to participate in healthcare decision making is variable, being influenced by age, education level, health status, physical, functional, psychological, financial and social factors (Kelly-Powell 1997). Participation in healthcare decision making can also be influenced by insufficient knowledge about available options including associated harms and benefits, and sub-optimal decision-making assistance (O’Connor 1998).

The ease with which a cancer patient makes decisions about their care is reflected in the experience of decisional conflict, found to be associated with decision delay and regret, treatment withdrawal and anxiety (Knops 2013). Cancer care related decisions can be difficult for patients due to issues that arise in communicating complex information about options for treatment and management. Cancer patients face an initial, and often perceived life-threatening, diagnosis and thereafter face complex and often fluid decisions about care options, which can interact with personal social and financial challenges.

There is very little evidence informing the association between fertility specialist referral and reductions in cancer patient decisional conflict. Of the limited number of studies available, most are case series or relatively small cross-sectional investigations. Other problems in the literature available on this topic include the inability to generalise the results to different populations and the high potential for selection bias.

A couple of studies have suggested that referral can reduce decisional conflict. In a study of 52 cancer patients who attended an in vitro fertilisation (IVF) clinic, decisional conflict was lower in patients who were able to ask questions during the consultation and higher for women who reported that cost influenced the treatment decision.[11] Late referral (two weeks from diagnosis) also increased decisional conflict for women.[12]

Referral may also influence the uptake of fertility preservation treatments for cancer patients. In one study all 23 males who banked sperm had received fertility counselling.[6] In another paper adolescents referred to a fertility specialist were almost five times more likely to successfully bank sperm.[13] Women referred for fertility preservation before cancer treatment were also more likely to proceed with treatment for fertility preservation.[1]

One considerable challenge in substantiating the impact of referral to a fertility specialist is that it is only one of the influencing factors investigated. The wide range of factors that influence decision making by cancer patients, makes the independent influence of referral to a fertility specialist particularly difficult to determine. The impact of referral to a fertility specialist in reducing decisional conflict is likely to vary among patients given the potential range of personal, practical and social factors influencing individual decisions.

For paediatric patients, multidisciplinary teams are recommended including paediatric oncofertility CNCs, gynaecologists, endocrinologists, oncologists surgeons, ethicists, in collaborative partnership with reproductive clinicians and scientists. Counselling can be implemented in stepped-care models depending on complexity of the case, clinician expertise and organisational protocols.[14][15][16]

Evidence summary

Evidence summaryLevelReferences
Currently, referral of patients with cancer to a fertility preservation specialist does not always occur, despite being acknowledged internationally as an important part of early cancer management. Decisional conflict and regret may be higher in patients who did not have the opportunity for a fertility preservation discussion with a specialist.III-3, IV[17], [2], [4], [5], [6], [7], [8], [9], [11]

Recommendation

Evidence-based recommendationGrade
Cancer health professionals should consider, where appropriate, referral to fertility preservation specialists. Patients with cancer should have an opportunity to meet with fertility counsellors to provide decision-making and psychological support.C


References

  1. Lee S, Heytens E, Moy F, Ozkavukcu S, Oktay K. Determinants of access to fertility preservation in women with breast cancer. Fertil Steril 2011 May;95(6):1932-6 Available from: http://www.ncbi.nlm.nih.gov/pubmed/21371704.
  2. Sigismondi C, Papaleo E, Viganò P, Vailati S, Candiani M, Ottolina J, et al. Fertility preservation in female cancer patients: a single center experience. Chin J Cancer 2015 Jan;34(1):56-60 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25556619.
  3. 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.
  4. 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.
  5. Goodman LR, Balthazar U, Kim J, Mersereau JE. Trends of socioeconomic disparities in referral patterns for fertility preservation consultation. Hum Reprod 2012 Jul;27(7):2076-81 Available from: http://www.ncbi.nlm.nih.gov/pubmed/22552688.
  6. Grover NS, Deal AM, Wood WA, Mersereau JE. Young Men With Cancer Experience Low Referral Rates for Fertility Counseling and Sperm Banking. J Oncol Pract 2016 May;12(5):465-71 Available from: http://www.ncbi.nlm.nih.gov/pubmed/27118159.
  7. Bastings L, Baysal O, Beerendonk CC, Braat DD, Nelen WL. Referral for fertility preservation counselling in female cancer patients. Hum Reprod 2014 Oct 10;29(10):2228-37 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25069500.
  8. 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.
  9. Yee S. Factors associated with the receipt of fertility preservation services along the decision-making pathway in young Canadian female cancer patients. J Assist Reprod Genet 2016 Feb;33(2):265-80 Available from: http://www.ncbi.nlm.nih.gov/pubmed/26560157.
  10. 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.
  11. Kim J, Deal AM, Balthazar U, Kondapalli LA, Gracia C, Mersereau JE. Fertility preservation consultation for women with cancer: are we helping patients make high-quality decisions? Reprod Biomed Online 2013 Jul;27(1):96-103 Available from: http://www.ncbi.nlm.nih.gov/pubmed/23669017.
  12. Kim J, Mersereau JE. A pilot study about female adolescent/young childhood cancer survivors' knowledge about reproductive health and their views about consultation with a fertility specialist. Palliat Support Care 2015 Oct;13(5):1251-60 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25341555.
  13. Klosky JL, Anderson LE, Russell KM, Huang L, Zhang H, Schover LR, et al. Provider Influences on Sperm Banking Outcomes Among Adolescent Males Newly Diagnosed With Cancer. J Adolesc Health 2017 Mar;60(3):277-283 Available from: http://www.ncbi.nlm.nih.gov/pubmed/27998702.
  14. Kemertzis MA, Ranjithakumaran H, Hand M, Peate M, Gillam L, McCarthy M, et al. Fertility Preservation Toolkit: A Clinician Resource to Assist Clinical Discussion and Decision Making in Pediatric and Adolescent Oncology. J Pediatr Hematol Oncol 2018 Apr;40(3):e133-e139 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29481385.
  15. Hand M, Kemertzis MA, Peate M, Gillam L, McCarthy M, Orme L, et al. A Clinical Decision Support System to Assist Pediatric Oncofertility: A Short Report. J Adolesc Young Adult Oncol 2018 Aug;7(4):509-513 Available from: http://www.ncbi.nlm.nih.gov/pubmed/29733237.
  16. 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.
  17. Lee S, Ozkavukcu S, Heytens E, Moy F, Oktay K. Value of early referral to fertility preservation in young women with breast cancer. J Clin Oncol 2010 Nov 1;28(31):4683-6 Available from: http://www.ncbi.nlm.nih.gov/pubmed/20876425.

Body of evidence

What proportion of cancer patients are referred to fertility specialists? Which patients are more likely to be referred to fertility specialists?

CitationLevel of EvidenceQuality of EvidenceSize of EffectNumber of PatientsRelevance of Evidence
Bastings L, Baysal O, Beerendonk CC, Braat DD, Nelen WL. Referral for fertility preservation counselling in female cancer patients. Hum Reprod 2014 Oct 10;29(10):2228-37 Available from:http://www.ncbi.nlm.nih.gov/pubmed/25069500III-3Medium52332
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
Goodman LR, Balthazar U, Kim J, Mersereau JE. Trends of socioeconomic disparities in referral patterns for fertility preservation consultation. Hum Reprod 2012 Jul;27(7):2076-81 Available from:http://www.ncbi.nlm.nih.gov/pubmed/22552688III-3Low31992
Grover NS, Deal AM, Wood WA, Mersereau JE. Young Men With Cancer Experience Low Referral Rates for Fertility Counseling and Sperm Banking. J Oncol Pract 2016 May;12(5):465-71 Available from:http://www.ncbi.nlm.nih.gov/pubmed/27118159IVLowN/A2012
Lee S, Heytens E, Moy F, Ozkavukcu S, Oktay K. Determinants of access to fertility preservation in women with breast cancer. Fertil Steril 2011 May;95(6):1932-6 Available from:http://www.ncbi.nlm.nih.gov/pubmed/21371704III-3Medium23142
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/25549654IVLow52312
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/29764330IVMedium22072
Yee S. Factors associated with the receipt of fertility preservation services along the decision-making pathway in young Canadian female cancer patients. J Assist Reprod Genet 2016 Feb;33(2):265-80 Available from:http://www.ncbi.nlm.nih.gov/pubmed/26560157IVLowN/A1882

Do patients who are referred to fertility specialists experience less decisional conflict? Are they more likely to access fertility preservation treatments?

CitationLevel of EvidenceQuality of EvidenceSize of EffectNumber of PatientsRelevance of Evidence
Grover NS, Deal AM, Wood WA, Mersereau JE. Young Men With Cancer Experience Low Referral Rates for Fertility Counseling and Sperm Banking. J Oncol Pract 2016 May;12(5):465-71 Available from:http://www.ncbi.nlm.nih.gov/pubmed/27118159IVLow2201N/A
Kim J, Deal AM, Balthazar U, Kondapalli LA, Gracia C, Mersereau JE. Fertility preservation consultation for women with cancer: are we helping patients make high-quality decisions? Reprod Biomed Online 2013 Jul;27(1):96-103 Available from:http://www.ncbi.nlm.nih.gov/pubmed/23669017IVMedium252N/A
Kim J, Mersereau JE. Early referral makes the decision-making about fertility preservation easier: a pilot survey study of young female cancer survivors. Support Care Cancer 2015 Jun;23(6):1663-7 Available from:http://www.ncbi.nlm.nih.gov/pubmed/25421445IVMedium4525
Klosky JL, Anderson LE, Russell KM, Huang L, Zhang H, Schover LR, et al. Provider Influences on Sperm Banking Outcomes Among Adolescent Males Newly Diagnosed With Cancer. J Adolesc Health 2017 Mar;60(3):277-283 Available from:http://www.ncbi.nlm.nih.gov/pubmed/27998702IVLow299N/A
Lee S, Heytens E, Moy F, Ozkavukcu S, Oktay K. Determinants of access to fertility preservation in women with breast cancer. Fertil Steril 2011 May;95(6):1932-6 Available from:http://www.ncbi.nlm.nih.gov/pubmed/21371704III-3Medium43144
Lee S, Ozkavukcu S, Heytens E, Moy F, Oktay K. Value of early referral to fertility preservation in young women with breast cancer. J Clin Oncol 2010 Nov 1;28(31):4683-6 Available from:http://www.ncbi.nlm.nih.gov/pubmed/20876425III-3Low293N/A
Mersereau JE, Goodman LR, Deal AM, Gorman JR, Whitcomb BW, Su HI. To preserve or not to preserve: how difficult is the decision about fertility preservation? Cancer 2013 Nov 15;119(22):4044-50 Available from:http://www.ncbi.nlm.nih.gov/pubmed/24037854IVLow22085
Cancer Council would like to acknowledge the traditional custodians of the land on which we live and work. We would also like to pay respect to the elders past and present and extend that respect to all other Aboriginal people.
Acknowledgement Image Title
Cancer Council Australia