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Communication: Are the Right People Telling the Right Information to the Right Patients?

What do patients want to know? Fertility is of great importance to many people diagnosed with cancer

  • 76% of childless reproductive-aged cancer survivors state that they would like to have children in the future1.
  • Many men report that sperm cryopreservation prior to chemotherapy helped them in their emotional battles against cancer2.
  • 57% of young women with breast cancer recalled substantial concern about future infertility3.
  • About 30% of women reported that fertility concerns influenced their cancer treatment decisions3.
  • Parents have concerns about fertility on behalf of their children with cancer.

Patients may have questions, but are not sure who/when to ask.

  • If patients have any questions about fertility and cancer treatments, they should mention this as early as possible when discussing cancer treatments.

Illustration of a group of people holding hands and standing in a circle
How are we doing?  Does the current model work? In general, patients are not satisfied with fertility preservation communication:

  • Surveys of breast cancer survivors indicate that over 25-50% did not receive adequate or appropriate education, counseling, or resources about reproductive decisions prior to their cancer treatments 4,5.
  • Only 11% of women believed that they received sufficient information about fertility preservation4.

Pre-consultation knowledge is low:

  • Recent studies have focused on objective measures of FP knowledge before presentation to FP consultation (FPC), showing overall poor fertility-knowledge in patients presenting for FPC6,7.
    • Higher pre-visit knowledge was noted in women with higher education and those who had actively sought out information.

Post-consultation knowledge is also poor:

  • Even after a fertility preservation consultation, objective measures of FP knowledge were poor, with an average score of about 50% correct on a validated tool8. Poor comprehension of FP-related information may falsely influence patient’s ultimate decisions about participation in some form of FP treatment.
  • Patient knowledge about risks associated with FP and future pregnancy after cancer is limited.  Knowledge items specifically addressing patient comprehension about risks were answered incorrectly by approximately 50% of patients. The patient’s misperception that there may be increased risk associated with either FP or birth defects in a future pregnancy may falsely influence not only their FP treatment decision but also their ultimate decision about pursuing future pregnancy at all.

Decisional Conflict:

  • Many patients have significant decisional conflict. Over 60% of women have high decisional conflict regarding fertility interventions before their consultation with the reproductive specialist7.  Women with higher knowledge about FP had lower decisional conflict7.
  • When asked 3-12 months after a consultation about FP, almost 40% of women debating FP treatments has a significant amount of decisional conflict9. Several factors independently predict increased decisional conflict, such as older age, fewer social support systems, perceiving time pressure about FP decisions, and not receiving FP treatments.
  • Ideally, we will improve the FP process in ways to decreased decisional conflict while allowing patients to make high quality decisions.
When should FP be discussed, and who is responsible for doing this? ASCO guidelines about fertility preservation10

The American Society of Clinical Oncology had a multi-disciplinary panel issue guidelines in 2005 stating:

  • As part of education and informed consent before cancer therapy, oncologists should address the possibility of infertility… and be prepared to discuss possible FP options or refer appropriate and interested patients to reproductive specialists.
  • Clinical judgment should be employed in the timing of raising this issue, but discussion at the earliest possible opportunity is encouraged.
  • These guidelines are not followed. One study, published in 2009, showed that less than half oncologists who participated in a survey project routinely referred reproductive-aged cancer patients to fertility specialists11.  Referrals were more likely in female physicians, and those who had a favorable attitude about FP.

Early referral to a reproductive specialist is essential

Patients who were referred prior to (rather than after) surgery, were more likely to have an earlier start to the COS cycle, earlier start to chemotherapy, and the option for a 2nd COS cycle (if desired)12.

Points of Discussion between the Oncology Team and the Patient:

  • At a minimum, two essential points that the Oncology team must communicate successfully with all reproductive-aged cancer patients are that:
    • Cancer treatments may cause future fertility problems
    • If the patient expresses any interest in his/her future reproductive options, a referral to a reproductive specialist and/or a psychosocial provider should be offered.
  • These two points can be broached by non-physician members of the Oncology team (such as nurses, social workers, therapists, etc).  One qualitative study involving focus groups with oncology nurses found that while most nurses believe that having discussions with patients about fertility is part of their role, less than half participated in these discussions13.
  • The Reproductive Specialist should provide a comprehensive consultation, detailing risks to fertility, pregnancy after cancer, all appropriate FP options, etc.
  • If members of the Oncology Team feel comfortable discussing FP in more detail, ASCO guidelines provide additional “talking points’. These can be discussed initially as patients decide about a FP consultation, or later in the process, as many patients request their Oncologist’s opinion when considering FP options.

Points of discussion information

Table adapted from Lee SJ, Schover LR, Partridge AH, et al: American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol 24:2917-31, 2006.
Can we improve educational methods about FP?
  • Pre-visit knowledge is limited, even in interested patients before a FP consult
  • Given the generally poor knowledge of patients following the FP consult, one study investigated potential factors that may be associated with higher knowledge scores8.
    • Additional contact with the REI (p<0.02) was associated with higher knowledge scores.  Perhaps a second contact should be routine, whether it’s a phone call or a second office visit.
    • Discussing FP options with someone else after the FP consult (p<0.01) was associated with higher knowledge scores.
    • Patients who used specific websites such as myoncofertility.org  as opposed to general internet searches also had significantly higher knowledge scores.  Patients should be alerted about the specific dedicated educational resources that exist regarding FP. This may be especially important for women who do not have access to a full FP consultation.
    • With regards to patient characteristics, only college education was associated with higher knowledge scores. While this is not modifiable, providers may need to modify their FP consult based on education level to improve comprehension of complex FP information.
  • Patients state that their preferred method to receive information about fertility-related issues is though an individual consultation with a fertility specialist14. This was followed by a decision aid, an informational video, and a question prompt sheet, those these tools have yet to be developed for this FP application.

References

  1. Schover LR, Rybicki LA, Martin BA, et al: Having children after cancer. A pilot survey of survivors’ attitudes and experiences. Cancer 86:697-709, 1999
  2. Saito K, Suzuki K, Iwasaki A, et al: Sperm cryopreservation before cancer chemotherapy helps in the emotional battle against cancer. Cancer 104:521-4, 2005
  3. Partridge AH, Gelber S, Peppercorn J, et al: Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol 22:4174-83, 2004
  4. Meneses K, McNees P, Azuero A, et al: Development of the Fertility and Cancer Project: an Internet approach to help young cancer survivors. Oncol Nurs Forum 37:191-7
  5. Thewes B, Meiser B, Rickard J, et al: The fertility- and menopause-related information needs of younger women with a diagnosis of breast cancer: a qualitative study. Psychooncology 12:500-11, 2003
  6. Balthazar U, Fritz MA, Mersereau JE: Fertility preservation: a pilot study to assess previsit patient knowledge quantitatively. Fertil Steril 95:1913-6, 2011
  7. Peate M, Meiser B, Friedlander M, et al: It’s Now or Never: Fertility-Related Knowledge, Decision-Making Preferences, and Treatment Intentions in Young Women With Breast Cancer–An Australian Fertility Decision Aid Collaborative Group Study. J Clin Oncol 29:1670-7
  8. Balthazar U, Fritz MA, Mersereau JE: Fertility preservation treatment options:  What do patients actually understand about their choices? Fertility and sterility 94:S104, 2010
  9. Balthazar U, Fritz MA, Mersereau JE: Decision making under duress:  What predicts decisional conflict among fertility preservation patients? Fertility and sterility 94:S105, 2010
  10. Lee SJ, Schover LR, Partridge AH, et al: American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol 24:2917-31, 2006
  11. Quinn GP, Vadaparampil ST, Lee JH, et al: Physician referral for fertility preservation in oncology patients: a national study of practice behaviors. J Clin Oncol 27:5952-7, 2009
  12. Lee S, Ozkavukcu S, Heytens E, et al: Value of early referral to fertility preservation in young women with breast cancer. J Clin Oncol 28:4683-6
  13. King L, Quinn GP, Vadaparampil ST, et al: Oncology nurses’ perceptions of barriers to discussion of fertility preservation with patients with cancer. Clin J Oncol Nurs 12:467-76, 2008
  14. Thewes B, Meiser B, Taylor A, et al: Fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol 23:5155-65, 2005

About the Author

Jennifer Mersereau, MD, MSCI, is an reproductive endocrinologist in the University of North Carolina’s Department of Obstetrics and Gynecology. As the Director of the Fertility Preservation Program, she has extensive experience guiding patients and physicians through the oncofertility experience.

This page was last updated: March 14, 2012.

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