Using Online Education to Teach Fertility Preservation

infertility photo: Sperm Aspiration sperm_aspiration.jpgIncreased knowledge and availability of treatments for childhood cancer have improved the likely hood of survival, pressing scientists and doctors to address quality of life concerns past the period of treatment (Hess, et al., 2010; Quinn, et al., 2011). According to Hess et al. (2010) 66% of those studied who had survived childhood cancer had no inclination to the long-term effects of the medical treatment they had received. Frankel Kelvin, Kroon, and Ogle (2012) indicated that infertility has been shown to be one of the long-term impacts of undergoing treatment for cancer. Frankel Kelvin et al. (2012) stated that technology is available to preserve the fertility of both children and adolescents before they undergo treatment for cancerous condition, regardless of their stage in puberty. However, a study conducted by Quinn et al. (2011) found that only 13.5% of oncologists “always or often” gave their patients information regarding fertility preservation. Meneses, McNees, Azuero, and Jukkala (2010) reported that among the cancer survivors they encountered interest in fertility preservation was increasing. There is a clear gap between the wants and needs regarding fertility of cancer patients and the willingness and practice of oncologists providing information about fertility preservation to patients.

For men undergoing treatment with chemotherapy or radiation, a range of fertility problems can later present themselves. Undergoing chemotherapy can result in the destruction of germ cells, reduction in testosterone levels, difficulty in ejaculating sperm, and impairment in hormonal regulation (Kelvin et al., 2012). Fertility challenges for women who have undergone chemotherapy or radiation include damage to the ovarian follicles or oocytes, early menopause, decreased blood flow to the uterus and damage to the endometrium, and impairment in hormonal regulation (Kelvin et al., 2012). To avoid loss of fertility, it is necessary that patients be educated about the possibility of preserving sperm cells and oocytes prior to the first radiation or chemotherapy treatment (Kelvin et al., 2012). According to Kelvin et al. (2012), doctors, families, and patients may all be too overwhelmed by the diagnosis and focused on survival to consider the possible long term implications on fertility.

There is a range of resources available for individuals interested in providing education adults who are seeking fertility preservation prior to cancer treatment as well as their families, doctors, and nurses responsible for their care. Kelvin et al. (2012) insisted that the process must begin with the nurse and oncologist who are diagnosing and treating the patient for the medical condition. These authors suggested that parents be involved in the process particularly in the case of adolescent males as teenage boys may undervalue potential parenthood (Kelvin et al., 2012). Huyghe, Martinetti, Sui, and Schover (2008) implemented an interactive computer education tool to distribute knowledge to oncologists and male cancer patients about sperm banking and fertility preservation. The tool for medical professionals included sections on the possible damage of cancer treatments to sperm calls, health of potential children, the process of sperm banking, assisted reproductive technology, and the possible ethical considerations of the procedure (Huyghe et al., 2008). In addition, the tool provided a section for patients and families that included a presentation of bullet point information, information of about the reproductive system, possible implications of cancer treatment on sperm cells and their production, as well as a cost benefit analysis (Huyghe et al., 2008). The study found that patients who used the tool did not differ from a control group on the amount of knowledge about fertility preservation they had, but the patients in the control group had more decisional conflict than those who used the tool (Huyghe et al., 2008). On the other hand, oncologists who used the tool did show an increased knowledge in sperm banking than those in the control group (Huyghe et al., 2008).

For female patients, the Fertility and Cancer Project has been evaluated for how effect it is in presenting and transferring knowledge about fertility preservation (Meneses et al., 2009). These authors describe the project as an, “[I]ntervention consist[ing] of educational modules, message forums, and the opportunity to interact directly with researchers,” (Meneses et al., 2009, pp. 1112). The study found that the Fertility and Cancer Project use resulted in increased vigor and vitality, increased scores on mental health tests, and increased social function (Meneses et al., 2009). The results also showed an increase in knowledge about breast cancer and fertility after cancer treatment (Meneses et al., 2009). Overall, Meneses et al. (2009) concluded that the project could be beneficial to women diagnosed with cancer who are seeking information regarding fertility preservation.

Wartella, Lauricella, and Hurwitz (2013) discussed the developmental difficulties in education children with a cancer diagnosis about fertility and fertility preservation (as cited in The Oncofertility Consortium at Northwestern University). These authors stated that prior to the age of 7 children are likely to only possess minimal knowledge of the sexuality and pregnancy (Wartella et al., 2013, as cited in Oncofertility Consortium). Children of middle school age are likely to have knowledge of correct terminology but confusion regarding sexual reproduction (Wartella et al., 2013, as cited in Oncofertility Consortium). This resource suggests that puppets or dolls could be used to teach young children important information regarding sexual reproduction and fertility preservation, so long as the terminology and descriptions are age appropriate (Wartella et al., 2013, as cited by Oncofertiliy Consortium).
The use of an online module, game, or course is the most sensible technique for providing information to a large group of people with diverse levels of knowledge on the topic of fertility preservation. From the two studies involving pre-established online resources, a few conclusions might be drawn. First, presentations type resources are likely to be of more value to medical professionals. The resource evaluated by Huyghe et al. (2008) appeared to provide more educational benefit to medical personal than to patients who would like to consider to treatment. The second conclusion is that the opportunity for patients to partake in message boards and have dialogue with researchers appears to be a significant factor in establishing mental health, social function, and knowledge about cancer treatments and fertility (Meneses et al., 2009).

spermIn constructing an online course intended for either medical personal or oncology patients, best practices can be difficult to pinpoint. The wide range of demographic factors including age, cognitive ability, and education level can complicate the search for an over arching best practice. Research by Simonds and Brock (2014) indicated that younger students preferred an interactive approach to learning, using tools such as message board, live chatting, and working in groups. The students in their study that identified themselves in an older age group preferred methods of teaching that were not interactive, such as prerecorded lectures (Simonds & Brock, 2014). Kebritchi (2014) also found that participants in an online course with more comfort and knowledge of technology preferred less interactive methods. For an online course regarding oncofertility, it would be wise to accommodate both preferences and all abilities by providing different types of learning tools that appeal to both types of learners. For patients, particularly of younger generations, interactive message boards will be particularly useful as both a teaching tool and a place for social comfort.

When implementing and online course in the realm of sexuality, Mckee, Green, and Hamarman (2012) formulated a guideline of best practices. Of the best practices identified by these authors, creating ground rules and having an appropriate facilitator would be most crucial to teaching oncofertility online. Any topic concerning health can be scary or overwhelming, and patients partaking in the course may have distinct emotional needs. Laying out ground rules of what is and what is not appropriate in message boards will be a necessity. Additionally, knowing when and when not to interject or facilitate would be a skill of upmost importance. Mckee et al. (2012) also discuss the importance of selfcare in their best practices for teaching sexuality. These authors indicated that an online environment is ideal for encouraging self care (Mckee et al., 2012). If a student or participant is troubled by a discussion that is happening, they can easily remove themselves from the environment and/or contact the facilitator directly, without fellow students observing their absence (Mckee et al., 2012).

What we take from this? It is imperative that resources be developed to address the gap between academic knowledge of oncofertility and patients’ ability to access pertinent information. An online academic course that includes modules, lecture, and message boards would be most effective at reaching a target audience of varying ages and abilities, including both medical staff, patients, and caregivers. This type of online learning format would have the greatest impact and necessary flexibility to educate regarding a topic that is complex as well as personal.

References

Hess, S. L., Jóóhannsdóóttir, I. M., Hamre, H., Kiserud, C. E., Loge, J. H., & Fossåå, S. D. (2011). Adult survivors of childhood malignant lymphoma are not aware of their risk of late effects. Acta Oncologica, 50(5), 653-659. doi:10.3109/0284186X.2010.550934

Huyghe, E., Martinetti, P., Sui, D., & Schover, L. R. (2009). Banking on Fatherhood: pilot studies of a computerized educational tool on sperm banking before cancer treatment. Psycho-Oncology, 18(9), 1011-1014. doi:10.1002/pon.1506

Kebritchi, M. (2014). Preferred teaching methods in online courses: Learners’ views. Journal of Online Learning & Teaching, 10(3): 468-488. Retrieved from: http://0-search.ebscohost.com.libcat.widener.edu/login.aspx?direct=true&db=ehh&AN=100227219&site=ehost-live

Kelvin, J. F., Kroon, L., & Ogle, S. K. (2012). Fertility Preservation for Patients With Cancer. Clinical Journal Of Oncology Nursing, 16(2), 205-210.

Mckee, R.W., Green, E.R., & Hamarman, A.M. (2012). Foundational best practices for online sexuality education. American Journal of Sexuality Education, 7(4):378-403. http://dx.doi.org/10.1080/15546128.2012.740949

Meneses, K., McNees, P., Azuero, A., & Jukkala, A. (2010). Evaluation of the Fertility and Cancer Project (FCP) among young breast cancer survivors. Psycho-Oncology, 19(10), 1112-1115. doi:10.1002 /pon.1648

Quinn, G. P., Vadaparampil, S. T., Malo, T., Reinecke, J., Bower, B., Albrecht, T., & Clayman, M. L. (2012). Oncologists’ use of patient educational materials about cancer and fertility preservation. Psycho-Oncology, 21(11), 1244-1249. doi:10.1002/pon.2022

Simonds, T.A., & Brock, B.L. (2014). Relationship between age, experience, and student preference for types of learning activities in online courses. Journal of Educators Online, 11(1): 1-19. Retrieved from: http://0-search.ebscohost.com.libcat.widener.edu/login.aspx?direct=true&db=eric&AN=EJ1020106&site=ehost-live

The Oncofertility Consortium at Northwestern University. (2013) Communicating Oncofertility to Children. Retrieved from: http://oncofertility.northwestern.edu/communicating-oncofertility-children

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4 responses to “Using Online Education to Teach Fertility Preservation

  1. I am still horrified from the first time we had a discussion about this and you told me how medical professionals did not see the point in teach fertility information to their young patients!

    I think that creating online courses for doctors on how to teach have this discussions with patients is a great idea! I also think that it would be super beneficial to teaching medical students who are pursuing oncology how to teach this information as well.

  2. This is a topic I had never thought of. I know that cancer and sometimes the treatment for cancer can impact a person’s fertility but I had never made the connection to childhood cancer. It is alarming the small number of medical providers that have this conversation regarding fertility preservation. This makes me think back to the societal stigma and shame that surrounds sexuality because “how could you ever think of a child as being sexual”. When really what people need to be considering is just what you mentioned: the long term impact to childhood cancer survivors. Great topic, thanks for sharing!

  3. I had no idea that most doctor’s don’t speak with younger cancer patients about fertility. That’s terrible! My cousin has recently defeated ovarian cancer. Seeing as she is in her lower 30s, the doctor spoke with her about fertility options, and she preserved some of her eggs. Maybe for us in the sexuality field, it seems like such an obvious conversation to have with patients who might lose their fertility. And I can even understand why doctors would neglect to remember to talk to child oncology patients about having babies in the future, but after all this time?! We’ve developed so much as a society, and continue to, but this is something I wouldn’t imagine to slip through the cracks. My sister-in-law is an oncology nurse in northern California. I’ll have to ask her what the policies are at her hospital regarding this topic. Thank you for bringing this to my attention, great article

  4. Oh goodness, what a sensitive and so very important topic you have written about. I love the idea of using online tools to educate individuals of all ages regarding fertility preservation.

    What concerns me here is to what extent will medical professionals be using tools like this to substitute their duty to inform patients in person of the possible fertility implications cancer treatment may have on them? Do the studies you looked at mention how the information was first presented to the patients? Or was it primarily presented to them within the online tools? I’ve heard so many personal accounts on how doctors seem to be more and more detached from the personal relationships with their patients. Will tools like this widen that gap even further? Are we leaving computers to do the emotional and sensitive work that we are not willing to do?

    I just think breaking this information to cancer patients and giving them a brief introduction to the implications would be much more beneficial if done so in person. This way, they are initially treated with respect and sensitivity whereas a computer program can really only provide facts and logic. Message boards and forums, as you mentioned were used within the study with female patients and younger students, can definitely provide support and a sense of community, but I think the initial moment in which patients realize they might not be able to have children in the future can be a very pivotal moment that needs to be approached with utmost sensitivity.

    Thank you for this! Definitely something I am going to think about more.

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