Background: Loss of fertility related to blood and marrow transplant (BMT) can cause long-term distress, fear, and anxiety for patients.1,2 Adolescent and young adult BMT patients may worry about how to approach dating and relationships and when to disclose information about health and infertility. Unfortunately, there is a shortage of tailored, easy-to-understand fertility education for BMT patients aged 18 to 40 years resulting in a knowledge gap surrounding fertility risks and preservation options.1,2 Insufficient education paired with the uncertainty of future reproductive capacity can make it difficult for BMT patients to cope. To better understand how patient and nurse navigators can address this issue, a national patient advocacy organization underwent a quality improvement project.
Objectives: To develop a tool for BMT patients and navigators that will enhance their (1) knowledge of fertility preservation and family planning options; and (2) comfort having difficult conversations about fertility and family planning.
Methods: A needs assessment was conducted that included a review of literature, environmental scan, and input from BMT recipients and health professionals. Six BMT recipients provided input on fertility topics important to them. A systematic approach, adapted from the Centers for Disease Control and Prevention Framework for Program Evaluation, was used to create a self-paced, e-learning module.3 Content was developed in partnership with national experts in the field of oncofertility, a BMT physician with research and practice experience in iatrogenic infertility, and an attorney specializing in legal issues related to fertility preservation. User testing was conducted to ensure appropriateness for the target audience and enhance the validity of the content. Twelve transplant center staff and 2 BMT patient navigators reviewed the module to ensure that content was accurate and the interface was user friendly. Finally, concepts of self-efficacy and self-management informed the format, functionality, and tone.
Results: The result is an interactive module that allows patients to access fertility information according to their needs. Eight chapters cover the following topics: Fertility Basics, Fertility and Transplant, Fertility Preservation for Women, Fertility Preservation for Men, Family Planning, Money Matters, Legal and Ethical Considerations, and Talking with Your Doctor. The module is free, available online, and mobile friendly. Between February 22, 2018, and July 1, 2018, 66 participants spent an average of 12:54 on the module and viewed an average of 16.5 slides. Data only include users who accessed the module from a desktop computer.
Conclusion: The results of this quality improvement project highlight the value of involving patients, content experts, and navigators in the development of a patient education tool. This coordinated approach to development resulted in an e-learning module that provides BMT patients with information about infertility and can be used by nurse and patient navigators to guide difficult conversations with patients. The coordinated process will be applied to the creation of future enhancements to the module, including a Spanish translation and the addition of a chapter for parents of pediatric patients. Ultimately, this tool suggests that when patient advocacy organizations employ a systematic approach, they can create effective tools for patients and oncology navigators.
References
- Loren AW, Brazauskas R, Chow EJ, et al. Physician perceptions and practice patterns regarding fertility preservation in hematopoietic cell transplant recipients. Bone Marrow Transplant. 2013;48:1091-1097.
- Loren AW, Mangu PB, Beck LN, et al. Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2013:31:2500-2510.
- Moore H, Preussler J, Denzen EM, et al. Designing and operationalizing a customized internal evaluation model for cancer treatment support programs. J Cancer Educ. 2014;29:463-472.
- Siekkinen M, Kesänen J, Vahlberg T, et al. Randomized, controlled trial of the effect of e-feedback on knowledge about radiotherapy of breast cancer patients in Finland. Nurs Health Sci. 2015;17:97-104.
