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April 2012, Volume 16, Number 2
Oncology Nursing 101
Dorothy Dulko, PhD, RN, AOCNP®—Associate Editor
Fertility Preservation for Patients With Cancer
Joanne Frankel Kelvin, RN, MSN, AOCN®, Leah Kroon, MN, RN, and Sue K. Ogle, MSN, CRNP
A key concern for young patients with cancer and survivors is the desire to parent a child. With infertility being a well-established long-term effect of many oncologic regimens, patients who want to have children often become distressed when faced with the possibility of losing their fertility. Several organizations have recommended that oncology professionals discuss options for fertility preservation when planning treatment; however, this does not routinely occur. Oncology nurses play a significant role in filling this practice gap by identifying patients who are interested in future parenting and ensuring they get the information and referrals they need to decide whether to pursue fertility preservation. This article outlines the available options, challenges in discussing fertility, and strategies to incorporate fertility education into practice.
According to Surveillance, Epidemiology, and End Results ([SEER], 2011a), about 165,000 men and women in the United States younger than age 45 face a diagnosis of cancer every year. With five-year expected survival rates of 68% and 83%, respectively, for adult and childhood cancers, quality-of-life issues for survivors have become increasingly important (American Cancer Society, 2011; SEER, 2011b). Key among those is the desire to parent a child. Many survivors want to be parents after treatment and are distressed about the possibility of infertility (Partridge et al., 2004; Peate, Meiser, Hickey, & Friedlander, 2009; Rosen, Rodriguez-Wallberg, & Rosenzweig, 2009; Schover, 2005; Schover, Brey, Lichtin, Lipschultz, & Jeha, 2002a; Schover, Rybicki, Martin, & Bringelsen, 1999; Tschudin & Bitzer, 2009). Infertility is a well-established long-term or permanent effect of many cancer treatments. Table 1 outlines the potential effects of cancer treatment on male and female fertility. Advances in reproductive technology enable most postpubertal patients to preserve fertility before treatment. Prepubertal patients also now have options that were not available in the past.
Several leading professional organizations have issued guidelines to address cancer and fertility. Oncology clinicians are recommended to inform patients about the risks of infertility from treatment, discuss options for fertility preservation, and refer interested patients to reproductive specialists as early as possible when planning treatment (Ethics Committee of the American Society for Reproductive Medicine, 2005; Fallat & Hutter, 2008; Lee et al., 2006; Pentheroudakis, Orecchia, Hoekstra, & Pavlidis, 2010). Despite recommendations to include options for fertility preservation when outlining cancer treatment plans, research has shown that oncology clinicians do not routinely discuss fertility with patients (King et al., 2008; Kotronoulas, Papadopoulou, & Petiraki, 2009; Quinn et al., 2007, 2009; Reebals, Brown, & Buckner, 2006; Schover et al., 2002b; Vadaparampil et al., 2007).
Options for Fertility Preservation
For patients at risk for treatment-related infertility who wish to consider fertility preservation, early referral to appropriate specialists is essential. Collection of sperm or oocytes during treatment is not recommended, as a single treatment with gonadotoxic therapy can affect gamete quality and DNA integrity (Lee et al., 2006). Whereas sperm banking can be accomplished in an hour or two, the time required for ovarian stimulation and egg retrieval prior to embryo or oocyte cryopreservation presents a challenge when female patients need to start cancer treatment without delay. For prepubescent patients enrolled in tissue cryopreservation trials, consent must be obtained as soon as possible after diagnosis, as research protocols may require that tissue be retrieved at the same time as other procedures requiring anesthesia, such as central line placement. Table 2 details fertility preservation options for women and men. Oncology nurses need to keep in mind that timely initiation of any fertility preservation measure is imperative.
Challenges in Discussing Fertility
Fertility preservation often is addressed in the context of a potentially life-threatening diagnosis (Woodruff, 2010). That creates many real and perceived challenges for clinicians, patients, families, and healthcare organizations. With a focus on planning cancer treatment, healthcare providers often spend little time preparing patients for issues of survivorship, including fertility (Ginsberg et al., 2008, Goodwin, Oosterhuis, Kiernan, Hudson, & Dahl, 2007; Lee et al., 2006, Reebals et al., 2006, Schover et al., 1999). Individual assumptions and personal biases may affect clinician willingness to discuss fertility concerns.
Patients and families often are overwhelmed by the cancer diagnosis and may not consider the potential impact of treatment on future fertility. Cost can be a significant barrier limiting fertility-sparing options for many patients. In the United States, the average cost for sperm banking is $576. Embryo freezing, including associated medications, can cost as much as $13,750 (LIVESTRONG, 2011). Most insurance carriers do not cover the cost of fertility preservation. Religious, cultural, and ethical beliefs also must be considered. Variability may exist in the interpretation of religious perspectives, and some patients and families will request that clergy be involved in the discussion. Lack of resources and clearly defined processes can result in organizational challenges to discussing fertility preservation. Figure 1 depicts patient, provider, and organizational challenges often faced when discussing fertility preservation.
Incorporating Fertility Education
Addressing fertility preservation with patients requires multidisciplinary collaboration between oncology nurses, oncologists, reproductive specialists, and mental health professionals. When planning care for a patient newly diagnosed with cancer who has reproductive potential, the oncology nurse needs to collaborate with the treating oncologist to clarify the potential impact of treatment on fertility, determine the time frame for initiation of treatment, confirm the safety of fertility preservation based on the patient’s situation, and plan an optimal time to have the discussion. Although the physician, not the nurse, generally informs the patient of infertility as a potential risk of cancer treatment, the nurse has a significant role in following up after the initial discussion. As a member of the care team, the oncology nurse can assess the patient’s interest in having children in the future and determine whether they have spoken with anyone or read about the potential impact of cancer treatment on fertility. The nurse can ensure that the patient understands the risk of infertility and, for female patients, the potential for premature menopause, emphasizing that the precise risk is impossible to predict. A description of the options to preserve fertility and provision of resources with more information to review is imperative. If patients are interested in seeing a reproductive specialist, the oncology nurse should ensure that the referral is made.
In conveying information about fertility, use simple, clear language. Recognize that, for many patients, fertility preservation is an act of hope. The oncology nurse must be able to put personal biases aside and respect the right of all patients to be informed of their risks and options, even those who already have children, are older, or who have advanced disease. Nurses must advocate for that right if physicians are reluctant to initiate the discussion. When conveying information that may be hard for patients to hear, be honest and matter of fact. Those discussions often require a significant amount of time and cannot be rushed.
Different approaches are needed, based on age and gender. For teenage boys, encouragement from healthcare providers and parents is important, as they may not value future parenthood at that time in their lives. Older men should not be neglected, particularly if they are in a relationship with a younger woman who may want a child. Decision making is more difficult for women than for men, as most options are invasive, require a delay in treatment of two to three weeks, and are quite costly. The fertility discussion is particularly challenging for teenage girls, who vary widely in their physical and emotional maturity.
Learning of the possibility of infertility can cause significant distress in many patients. Being present and allowing expression of loss, grief, and anger provides valuable support for many patients. If a patient describes being overwhelmed by these emotions, remains distressed for many weeks, or is unable to make decisions about treatment because of their distress, consider making a referral to a mental health specialist for counseling.
In the Organization
To improve fertility preservation education within the practice setting, oncology nurses should work with other clinicians who have a shared interest and commitment to the issue. Reach out to colleagues in medical, surgical, and radiation oncology; survivorship, adolescent, and young adult oncology; general gynecology and urology; and reproductive medicine. Working within a larger group optimizes oncology nurses’ opportunities to be effective champions of change.
Ensure that educational resources are available for patients to provide more in-depth information than the oncology clinicians may have the knowledge or time to discuss. Although some organizations may want to create customized cards or booklets, a number of free downloadable brochures and fact sheets, as well as Web sites, are available from organizations focused on cancer and fertility (see Figure 2).
Having a local network of reproductive specialists and a clearly defined referral process also is important. Locate sperm banks, reproductive urologists, and reproductive endocrinologists in the community to whom patients can be referred. Ensure they can accommodate the needs of patients and establish a simple method for making referrals so that patients are seen quickly, relevant medical information is shared, and fertility preservation efforts are coordinated with the planned timing for initiation of the patient’s cancer treatment. To assist patients in accessing such services, refer patients to the LIVESTRONG® Sharing Hope program, which provides financial assistance to eligible patients undertaking fertility preservation at a participating center.
Once the resources are in place, educate other clinicians. Invite local reproductive specialists to discuss the technology currently available to provide fertility preservation. Work with nursing and medical leadership on when best to schedule those sessions to ensure the largest possible audience is reached. In addition, choose a relevant article for discussion at a journal club, or select a young patient concerned about infertility to present at a case conference. At the same time, disseminate information about the resources developed and the process for making referrals.
Oncology nurses can play a significant role in overcoming barriers to discussing fertility. Identifying patients who are interested in future childbearing, ensuring they are informed of risks and options, providing them with appropriate resources, and assisting with making referrals will increase the likelihood that all patients have the necessary information and opportunities to decide whether or not to pursue fertility preservation.
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Joanne Frankel Kelvin, RN, MSN, AOCN®, is a clinical nurse specialist in Survivorship at Memorial Sloan-Kettering Cancer Center in New York, NY; Leah Kroon, MN, RN, is a clinical nurse specialist in the Adolescent and Young Adult Oncology Program at Seattle Children’s Hospital in Washington; and Sue K. Ogle, MSN, CRNP, is a cancer survivorship nurse practitioner and nurse manager at Children’s Hospital of Philadelphia in Pennsylvania. The authors take full responsibility for the content of the article. The authors did not receive honoraria for this work. No financial relationships relevant to the content of this article have been disclosed by the authors or editorial staff. Kelvin can be reached at email@example.com, with copy to editor at CJONEditor@ons.org.