Background: Women diagnosed with breast cancer before age 45 face unique survivorship challenges, including early menopause, late effects of treatment, psychosocial distress, and sex and intimacy changes.1-5 Few cancer centers offer patient education programs that address these survivorship topics for young women. In addition, some healthcare providers report feeling unprepared to adequately address these patient needs.5
Objectives: To address this identified gap in patient education programming, Living Beyond Breast Cancer (LBBC), a national nonprofit, developed the Survivorship Series for Young Women Affected by Breast Cancer and a training curriculum to train nurse navigators to implement this 4-part patient education program in their cancer centers.
Methods: To develop this pilot program, LBBC identified 4 survivorship areas and developed 4 corresponding sessions in the series. LBBC staff collaborated with a nurse practitioner with expertise in breast cancer survivorship to develop the sessions. The sessions included “Let’s Talk About Sex and Breast Cancer,” “Hot and Bothered: Coping with Early Menopause,” “Stay Alert: Managing the Long-Term Side Effects of Breast Cancer Treatments,” and “The More You Know: Understanding Your Genetic Code and Cancer Risk.” For each session, an in-depth training for nurses and a patient education session was developed. In January 2018, LBBC recruited nationally and selected 12 nurse navigators to be nurse program leaders. The nurse program leaders agreed to participate in an in-person training, implement the sessions at their cancer centers between May and September 2018, participate in monthly program leader conference calls, and contribute in the program evaluation efforts. During the training, each survivorship topic was reviewed in-depth to increase the nurse’s knowledge of the issue and management strategies. The nurse program leaders were also trained on how to market the series to their patients and how to implement the series. Before the training, the nurse program leaders completed an online preassessment of their knowledge on the various training session topics. After the training, the nurse program leaders completed a hand-written postassessment.
Results: The training evaluation showed that nurse program leaders increased their knowledge in all domains. Most program leaders had average or above average knowledge for most topics before the training. The areas of the most knowledge gain included tools to evaluate sexual intimacy issues, potential late effects of breast cancer treatment on young women, and personalized care for young women diagnosed with breast cancer. All program leaders were “extremely satisfied” or “very satisfied” with the content and delivery of the training. Since the training, all program leaders have scheduled the Survivorship Series sessions in their cancer centers.
Conclusion: The training evaluation results show that LBBC’s training for nurse program leaders was successful in increasing knowledge and skills of the survivorship series topics and preparing the nurses to implement the series in their cancer center. By increasing the nurse program leaders’ knowledge and by implementing the Survivorship Series in their cancer centers, LBBC intends that young women diagnosed with breast cancer who participate in the series will have more knowledge and tools to address their unique challenges.
- Howard-Anderson J, Ganz PA, Bower JE, Stanton AL. Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. J Natl Cancer Inst. 2012;104:386-405.
- Howard-Anderson J, Ganz P, Bower J, Stanton A. Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. J Natl Cancer Inst. 2012;104:1-20.
- Bloom JR, Stewart SL, Oakley-Girvan I, et al. Quality of life of younger breast cancer survivors: persistence of problems and sense of well-being. Psychooncology. 2012;21:655-665.
- Salsman JM, Garcia SF, Yanez B, et al. Physical, emotional, and social health differences between posttreatment young adults with cancer and matched healthy controls. Cancer. 2014;120:2247-2254.
- Dizon DS, Suzin D, McIlvenna S. Sexual health as a survivorship issue for female cancer survivors. Oncologist. 2014;19:202-210.