89. Development of a Patient Education Resource Feel: Focus on Educating Everyone About Sensation Loss After Mastectomy

PURPOSE: To address a gap in awareness and communication about changes in breast sensation following mastectomy with a professionally-produced, patient-centered, evidence-based educational video aimed at patients, surgeons, and the broader public. METHODS: From 9/2022 to 5/2023, 19 qualitative interviews were conducted with women who had previously undergone mastectomy. The majority of participants (68%) stated that they did not recall being informed about breast sensation loss after mastectomy or wished that they had known more before the procedure. Descriptive data and a search of extant, publicly available video material demonstrated a need for a clear, frank, medically appropriate, non-commercial, evidence-based tool to better prepare patients for sensation loss after mastectomy. The authors developed a brief educational video [Focus on Educating Everyone about Sensation Loss (“FEEL”)] with multiple iterations based on input from stakeholders and providers to address this need. RESULTS: A 7-minute video was produced with an Emmy award-winning production team at the University of Chicago. The video featured a diversity of post-mastectomy patients (recruited by participating providers and a patient research registry), describing their experiences with breast sensation loss. In addition, breast oncology and breast reconstructive surgeons, a psycho-oncologist certified in sex therapy, and a gynecologist with expertise in oncosexuality addressed patients’ main educational needs including: (a) how and why sensation loss occurs after mastectomy, (b) implications of changes in breast sensation for sexual function, and (c) strategies to promote patient-surgeon communication about sensation loss. Video participants and a longstanding patient advisory board advised throughout to ensure that the final product adequately addressed patient concerns. In April 2024, the FEEL video was presented at the 9th Annual Conference of the Scientific Network on Female Sexual Health and Cancer to an audience of researchers, clinicians, and patient advocates. Pre- and post-viewing data were collected from 61 conference participants. Surveys evaluated participants’ confidence with finding resources on breast sensation loss after mastectomy for themselves and their patients on a scale of 0-10 (10 being highest). Additionally, post-viewing surveys evaluated participants’ likelihood of sharing the FEEL video with their professional network, also on a scale of 0-10, and asked where they would like to see this video disseminated. On pre-viewing surveys, 62% of respondents indicated that they were not at all or only a little confident about where to find resources. After viewing the FEEL video, 60% of participants indicated that they were quite or very confident in their ability to find resources. Participants’ rating of their likelihood of sharing the FEEL video with others ranged from 0 - 10, with a mean rating of 9.1/10. CONCLUSIONS: The FEEL video, developed with patient input, promoted clinicians’ and patient advocates’ confidence in finding resources about breast sensation after mastectomy. Most viewers indicated a high likelihood of sharing the video with others. This work supports the development of multi-media resources in shared-decision making and patient education around breast cancer outcomes.