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Clinical Question

What are the reproductive concerns and information needs of people diagnosed with cancer and their families?

Future fertility is a significant concern for people diagnosed with cancer.[1] Patients desiring children at the time of diagnosis and people with post-treatment infertility are more vulnerable to reproductive concerns, independent of age.[2] These concerns may result in distress, with infertility-related distress recognised as a long-term effect of a cancer diagnosis. There have been attempts to examine predictors of distress, but there are inconsistency in the findings. Infertility distress has been positively correlated with psychological distress, and negatively correlated with quality of life, relationship satisfaction, and acceptance of cancer. This is seen across gender, cancer type and stage, relationship status, and age.[3]

Women with cancer report significantly higher infertility distress than men, while childlessness and relationship dissatisfaction are unique predictors of distress for men with cancer.[4] Despite the importance of fertility for people diagnosed with cancer, unsurprisingly survival and good health are also a priority. Adolescent males diagnosed with cancer rank having children as an important life goal, however having good health is more important. [5] Fertility concerns of adolescent and young adult patients with cancer focus on health risks for the patient and their potential children, what infertility would mean for their future, and partner reactions to potential fertility problems.[6][2]

Few studies have explored the fertility information needs of patients with cancer.[7] Young women with breast cancer require information regarding the likelihood of specific treatments affecting their fertility, as this may influence their treatment decisions.[8] Many men with cancer are concerned they will pass on cancer to their children. Informing men of the low likelihood of this risk may encourage more men to preserve sperm [9]. Women with cancer also have fears about cancer recurrence due to pregnancy[10][8] and the impact of inherited cancer predisposition on any future children.

A systematic review found that young patients with cancer wish to be more adequately informed about fertility.[11] While many parents and young people make shared decisions around fertility, parents and adolescents may have different priorities regarding future fertility and fertility preservation. Parents and health professionals need to consider this when counselling a child.[5] When discussions are held with a child’s parents the preference for the child to be present depends on the child’s level of emotional and mental development and independence. Some children are too young or feel overly burdened to participate in these discussions.[12] Embarrassment when discussing fertility can lead to rejection of fertility preservation which may later be regretted.[11]

Most young people living with a history of cancer are sexually active and confusion about their fertility status may lead to risk taking behaviour and unplanned pregnancy. It is important to inform young patients with cancer of the likely uncertainty of their fertility status and the need for contraception despite any risk of infertility.[11]

Evidence Summary

Evidence summaryLevelReferences
Future fertility and the opportunity to have a family are among the most important concerns of people with cancer. Receiving appropriate and accessible information is regarded as a high priority by patients and their families.IV[13], [6], [2], [5], [10], [9], [11], [8], [12], [14]


Recommendation

Evidence-based recommendationGrade
All patients with cancer, regardless of age or relationship status, should receive age-appropriate information and support regarding the impact of specific cancer treatments on their future fertility.C


Good practice point

Practice point
Where possible, the desire of the person with cancer for future fertility should be taken into account when choosing systemic and local cancer treatments.


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. Shah MS, Letourneau JM, Niemasik EE, Bleil M, McCulloch CE, Rosen MP. The role of in-depth reproductive health counseling in addressing reproductive health concerns in female survivors of nongynecologic cancers. J Psychosoc Oncol 2016 Jul;34(4):305-17 Available from: http://www.ncbi.nlm.nih.gov/pubmed/27144587.
  3. 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.
  4. Ussher JM, Perz J. Infertility-related distress following cancer for women and men: A mixed method study. Psychooncology 2019 Mar;28(3):607-614 Available from: http://www.ncbi.nlm.nih.gov/pubmed/30659694.
  5. Klosky JL, Simmons JL, Russell KM, Foster RH, Sabbatini GM, Canavera KE, et al. Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents. Support Care Cancer 2015 Feb;23(2):333-41 Available from: http://www.ncbi.nlm.nih.gov/pubmed/25082365.
  6. Benedict C, Shuk E, Ford JS. Fertility Issues in Adolescent and Young Adult Cancer Survivors. J Adolesc Young Adult Oncol 2016 Mar;5(1):48-57 Available from: http://www.ncbi.nlm.nih.gov/pubmed/26812452.
  7. Logan S, Perz J, Ussher JM, Peate M, Anazodo A. A systematic review of patient oncofertility support needs in reproductive cancer patients aged 14 to 45 years of age. Psychooncology 2018 Feb;27(2):401-409 Available from: http://www.ncbi.nlm.nih.gov/pubmed/28734119.
  8. 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 Jul;116(2):215-23 Available from: http://www.ncbi.nlm.nih.gov/pubmed/19390962.
  9. Perez S, Lambert SD, Lee V, Loiselle CG, Chan P, Gupta A, et al. A fertility needs assessment survey of male cancer patients. Psychooncology 2018 Dec;27(12):2747-2753 Available from: http://www.ncbi.nlm.nih.gov/pubmed/30176700.
  10. 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. Psychooncology 2011 Oct;20(10):1044-52 Available from: http://www.ncbi.nlm.nih.gov/pubmed/20818600.
  11. Wright CI, Coad J, Morgan S, Stark D, Cable M. 'Just in case': the fertility information needs of teenagers and young adults with cancer. Eur J Cancer Care (Engl) 2014 Mar;23(2):189-98 Available from: http://www.ncbi.nlm.nih.gov/pubmed/24138775.
  12. 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.
  13. 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.
  14. Li N, Jayasinghe Y, Kemertzis MA, Moore P, Peate M. Fertility Preservation in Pediatric and Adolescent Oncology Patients: The Decision-Making Process of Parents. J Adolesc Young Adult Oncol 2017 Jun;6(2):213-222 Available from: http://www.ncbi.nlm.nih.gov/pubmed/27906588.

Body of Evidence

What are the reproductive concerns and information needs of cancer patients and their families regarding the risk of infertility from cancer treatment?

CitationLevel of EvidenceQuality of EvidenceSize of EffectNumber of PatientsRelevance of Evidence
Benedict C, Shuk E, Ford JS. Fertility Issues in Adolescent and Young Adult Cancer Survivors. J Adolesc Young Adult Oncol 2016 Mar;5(1):48-57 Available from:http://www.ncbi.nlm.nih.gov/pubmed/26812452N/AN/AN/A43N/A
Klosky JL, Simmons JL, Russell KM, Foster RH, Sabbatini GM, Canavera KE, et al. Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents. Support Care Cancer 2015 Feb;23(2):333-41 Available from:http://www.ncbi.nlm.nih.gov/pubmed/25082365IVLowN/A96N/A
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. Psychooncology 2011 Oct;20(10):1044-52 Available from:http://www.ncbi.nlm.nih.gov/pubmed/20818600N/AN/AN/A24N/A
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 Jul;116(2):215-23 Available from:http://www.ncbi.nlm.nih.gov/pubmed/19390962N/ALowN/A2,603N/A
Perez S, Lambert SD, Lee V, Loiselle CG, Chan P, Gupta A, et al. A fertility needs assessment survey of male cancer patients. Psychooncology 2018 Dec;27(12):2747-2753 Available from:http://www.ncbi.nlm.nih.gov/pubmed/30176700IVMediumN/A192N/A
Shah MS, Letourneau JM, Niemasik EE, Bleil M, McCulloch CE, Rosen MP. The role of in-depth reproductive health counseling in addressing reproductive health concerns in female survivors of nongynecologic cancers. J Psychosoc Oncol 2016 Jul;34(4):305-17 Available from:http://www.ncbi.nlm.nih.gov/pubmed/27144587IVLowN/A356N/A
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.N/ALowN/A3,903N/A
Wright CI, Coad J, Morgan S, Stark D, Cable M. 'Just in case': the fertility information needs of teenagers and young adults with cancer. Eur J Cancer Care (Engl) 2014 Mar;23(2):189-98 Available from:http://www.ncbi.nlm.nih.gov/pubmed/24138775N/ALowN/A40N/A