Lights genes action: Video strategy for BRCA1/2 patient education

Abstract

Objectives

Pathogenic variants (PVs) in the BRCA1 and BRCA2 (BRCA1/2) genes increase lifetime risk of several cancers including breast and ovarian. Communicating complex genetic risk and management strategies can be challenging. Digital education tools, like short videos, can provide standardized, accessible information to support patient understanding and family communication.

Methods

A short educational video reviewing BRCA1/2-associated cancer risks, guideline-based screening, and risk-reduction strategies was developed using National Comprehensive Cancer Network (NCCN) recommendations in patient-centered language. From July–August 2024, patients with known BRCA1/2 PVs attending a gynecologic oncology clinic were offered video access via a QR code and invited to complete a voluntary survey assessing usability, satisfaction, perceived usefulness, trustworthiness, and potential value for family communication. Survey responses were summarized descriptively.

Results

Of 34 patients offered the video, 32 (94%) viewed it, of which 28 (88%) completed the survey. Median age of participants was 43 years (interquartile range, [IQR]: 35–60 years). All participants were female, 68% White, 11% Hispanic or Latino, 46% BRCA1 PVs, and 54% BRCA2 PVs. Most participants rated the video as very easy to use (96%), very understandable (96%), and satisfying (86%), with 79% finding the content useful and 64% finding the video helpful for communicating risk with relatives. Qualitative feedback highlighted clarity and usefulness for newly diagnosed individuals.

Conclusions

These findings suggest that a brief educational video on BRCA1/2 risk was feasible, highly acceptable, and perceived as useful by participants. Video-based education may serve as an effective adjunct to clinical counseling and facilitate communication of hereditary cancer risk with relatives.

Graphical abstract

Highlights

• •96% of participants found the BRCA1/2 educational video easy to use and understand.
• •Participants reported high trust, usability, and satisfaction with video education.
• •Short video education was feasible and acceptable in gynecologic oncology care.
• •Participants valued the video for explaining BRCA1/2 risks and management clearly.

1. Introduction

Pathogenic variants (PVs) in the BRCA1 and BRCA2 (BRCA1/2) genes are associated with increased lifetime risks of several cancers including breast and ovarian cancer (Daly et al., 2025). For individuals with BRCA1/2 PVs, understanding cancer risk and available strategies for screening and risk reduction are essential for informed decision-making, long-term care planning, and communication with family members (Sessa et al., 2023). However, communicating complex genetic risk information in clinical settings can be challenging, particularly given time constraints, emotional distress at diagnosis, and variability in patient health literacy. Individuals with BRCA1/2 PVs must make complex decisions while coordinating their care and encouraging their at-risk relatives to pursue genetic testing themselves, all of which can cause psychosocial distress (Makhnoon et al., 2022; Dibble et al., 2022; Frey et al., 2022; Kahn et al., 2023; Karimaghaie et al., 2026). Prior work from our group has demonstrated substantial unmet supportive care needs among individuals with hereditary cancer syndromes, particularly related to education, family communication, cascade testing, care coordination, reproductive concerns, and mental health resources. Additional work has further emphasized that psychosocial barriers, including surveillance fatigue, family communication challenges, and chronic uncertainty, may negatively impact engagement with hereditary cancer prevention and risk-reduction strategies. (Gaddipati et al., 2026; Epstein et al., 2026)

Digital educational tools, including short videos, have emerged as promising adjuncts to in-person counseling by providing standardized, accessible information that patients can review at their own pace (Briggs et al., 2022). Prior studies have demonstrated that online and video-based resources are frequently sought by individuals with hereditary cancer risk, yet the quality and clarity of available materials vary widely (Laforet et al., 2022). There remains a need for concise, clinically accurate, and guideline-consistent educational resources that are acceptable to patients and easily integrated into routine oncologic care.

To address this gap, we developed a brief educational video designed to provide foundational information on BRCA1/2-associated cancer risks and evidence-based strategies for screening and risk reduction. The video was implemented in a gynecologic oncology clinic and offered to patients with known BRCA1/2 PVs using a QR code-based delivery model via their own smartphones. The objective of this study was to evaluate patient experience with this educational video, including usability, satisfaction, perceived usefulness, trustworthiness, and potential value for facilitating communication of genetic risk with family members.

2. Methods

2.1. Video development

A brief educational video was developed to provide foundational information on BRCA1/2 PVs, associated breast and ovarian cancer risks, and guideline-based strategies for cancer screening and risk reduction (Fig. 1). The video content was informed by National Comprehensive Cancer Network (NCCN) recommendations and reviewed by clinicians with expertise in breast oncology, gynecologic oncology and cancer genetics. The final video had a runtime of 2 min and 46 s and was designed for asynchronous viewing using clear, patient-centered language. The video is available at https://www.youtube.com/watch?v=BoLSn8_g0ww.

Fig. 1.

Representative frames from the BRCA1/2 educational video: (A) breast cancer risk; (B) ovarian cancer risk; (C) recommendations for breast cancer screening; and (D) recommendations for risk-reducing salpingo-oophorectomy (caption text reflects narrated content from the video).

2.2. Study population and setting

From July 2024 through August 2024, all patients with known BRCA1/2 PVs presenting for care in a gynecologic oncology clinic were offered access to the educational video during a clinical visit. Patients received a QR code linking to the video and were invited to complete a voluntary survey after viewing.

2.3. Survey instrument

Participant experience with the educational video was assessed using a 14-item survey adapted from previously described instruments evaluating digital health and educational tools (Ritterband et al., 2012). Survey domains included ease of use, interest and engagement, satisfaction, perceived usefulness, trustworthiness, privacy concerns, and likelihood of future use or sharing with family members. Responses were recorded using 5-point Likert scales, with additional free-text questions allowing participants to comment on the most and least helpful aspects of the video (Supplemental Material 1).

2.4. Data analysis

Survey responses were summarized using descriptive statistics. Continuous variables were reported as medians with ranges, and categorical variables were reported as frequencies and percentages. Free-text responses were reviewed to identify representative participant comments. Given the exploratory nature of the study and small sample size, no inferential statistical analyses were performed.

2.5. Ethical considerations

This prospective initiative aimed to assess patient acceptability of a brief educational video designed to support understanding and communication of BRCA1/2-associated cancer risk, as well as perceptions of its usability and usefulness for family communication. Prospective implementation of the educational video and the voluntary survey was determined to be Institutional Review Board (IRB)-exempt as a quality improvement initiative. Retrospective review of patient clinical and demographic characteristics was approved by the Weill Cornell Medicine IRB.

3. Results

3.1. Participant demographics and clinical characteristics

Among the 34 patients offered access to the educational video during a gynecologic oncology visit, 32 (94%) agreed to view the video. Of these, 28 (88%) completed the accompanying survey. The median age of participants was 43 years (interquartile range, [IQR]: 35–60 years). All participants were female, 19 (68%) White, 1 (4%) other combinations not described, and 8 (29%) chose not to provide race. Three (11%) participants identified as Hispanic or Latino. Thirteen (46%) participants had the BRCA1 PV, and 15 (54%) had the BRCA2 PV. Eleven (39%) participants reported a personal history of cancer, of which 9 (82%) reported a prior diagnosis of breast cancer. Nineteen (68%) participants had previously undergone risk-reducing surgery, including salpingo-oophorectomy with or without hysterectomy (14, 74%), mastectomy (5, 26%), and salpingectomy (3, 16%). Some participants have undergone more than one surgery thus total exceeds 100% (Table 1).

Table 1.

Participant demographics and clinical characteristics (n = 28). Abbreviations: IQR, interquartile range.

Participant characteristic	Median, (IQR), range
Age in years	43, (35–60), 24–76
	N (%)
Sex
Female	28 (100.0)
Race
White	19 (67.9)
Other	1 (3.6)
Not available	8 (28.6)
Ethnicity
Non-Hispanic	17 (60.7)
Hispanic	3 (10.7)
Not available	8 (28.6)
Pathogenic variant
BRCA1	13 (46.4)
BRCA2	15 (53.6)
Prior history of cancer
Yes	11 (39.3)
No	17 (60.7)
Cancer type
Breast	9 (81.8)
Thyroid	2 (18.1)
Other⁎	5 (45.5)
History of risk-reducing surgery
Yes	19 (67.9)
No	9 (32.1)
Risk-reducing surgery type⁎⁎
Salpingo-oophorectomy with or without hysterectomy	14 (73.7)
Mastectomy	5 (26.3)
Salpingectomy	3 (15.8)

^⁎Includes 5 cancer types with one occurrence each: adrenal, bladder, lung, melanoma, neuroendocrine. Some participants reported more than one cancer type; total exceeds 100%.

^⁎⁎Some participants have undergone more than one surgery; total exceeds 100%.

3.2. Participant responses to BRCA1/2 educational video

Among the 28 participants completing the post-video survey, 28 (100%) found the video easy to use, with 27 (96%) finding it very easy to use and easy to understand. Of this group, twenty-four (86%) were satisfied with the video, and 22 (79%) found the information useful. Participants were not worried about their privacy in using the video (89%) and felt they could trust the information (96%). Additionally, the video effectively maintained their interest and attention (96%) (Fig. 2). Seventeen (61%) participants reported they would share the video with others, and 18 (64%) reported this tool would help them communicate genetic risk with relatives.

Fig. 2.

Participant responses to BRCA1/2 educational video.

In open-ended responses, 11 (39%) participants explicitly stated that the statistical information provided in the video was the most helpful aspect. Participants also frequently noted that the video explains complex information in a clear manner. Qualitative feedback reinforced these findings. Representative comments included statements such as, “I wish this video was available when I was first diagnosed with BRCA,” and “This video provides clarity about steps for someone who just discovered the gene.”

4. Discussion

In this clinic-based evaluation, participants with BRCA1/2 PVs reported high levels of satisfaction, usability, and perceived usefulness after viewing a brief educational video addressing hereditary cancer risk and guideline-based risk management strategies. Most participants found the video easy to use and understand, trusted the information presented, and indicated a willingness to share the resource with family members. These findings suggest that short, video-based educational tools may serve as acceptable and accessible adjuncts to clinical care for individuals navigating hereditary cancer risk.

Effective communication of BRCA1/2-associated cancer risk is essential for informed decision-making, yet counseling encounters are often constrained by time, emotional burden at diagnosis, and variability in patient baseline knowledge (Daly et al., 2025; Nelson et al., 2019; Bedrosian et al., 2024). The video evaluated in this study was designed to provide standardized, foundational information aligned with current clinical guidelines, including recommendations from the NCCN, while emphasizing shared decision-making and multidisciplinary support (Daly et al., 2025). Participants rated the video as very easy to use and reported that the information presented was easy to understand. Overall satisfaction with the video was high, and participants found the content useful and engaging. Patient-reported trust in the content and satisfaction with the format suggest that such tools may help reinforce key concepts discussed during clinical visits and allow participants to revisit information at their own pace.

Individuals with hereditary cancer syndromes often experience substantial psychosocial and informational needs related to understanding their lifetime cancer risk, long-term risk management, family communication, and coordination of care. Prior work from our group demonstrated high patient interest in genetics-informed social work support to meet these needs. (Gaddipati et al., 2026; Epstein et al., 2026) Although integration of social work services may help address these challenges, such resource-intensive models may not be scalable across all clinical settings. Accordingly, there remains a need for accessible and scalable educational approaches to support patients navigating hereditary cancer risk. Brief digital educational tools, such as video-based interventions, may represent a low-cost, easily disseminated adjunct to improve patient understanding and facilitate communication of hereditary cancer risk information.

Notably, many participants indicated that the video could support communication of genetic risk with family members, an important consideration given the role of family discussion and cascade testing in hereditary cancer syndromes (Frey et al., 2022; Kahn et al., 2023). While this study did not directly assess downstream outcomes such as family testing uptake or behavioral change, the perceived value of the video in facilitating family communication highlights a potential area for future investigation.

This study has several limitations. The sample size was small and drawn from a single gynecologic oncology clinic, which may limit generalizability. Outcomes were based on self-reported participant experience rather than objective measures of knowledge acquisition or behavior change. Additionally, participants had already undergone genetic testing, and responses may differ among individuals newly receiving genetic test results or those in other clinical settings. As such, findings should be interpreted as descriptive and exploratory. Despite these limitations, this work demonstrates the feasibility and acceptability of integrating a brief educational video into routine gynecologic oncology care for individuals with BRCA1/2 PVs. Given the complexity of managing cancer risk, surveillance, and preventive decision-making associated with the BRCA1/2 PV, accessible, standardized educational tools may help reduce cognitive and informational burden for patients. Future studies could evaluate the impact of similar tools on knowledge retention, decisional confidence, or communication with at-risk relatives, as well as explore adaptation of video-based education for broader populations and care settings. Evaluation among individuals newly diagnosed with a BRCA1/2 PV and over longer follow-up periods may provide additional insight into the role of video-based education at the time of diagnosis and throughout longitudinal care. Future studies should also evaluate whether video-based education influences uptake of recommended screening and risk-reduction interventions, communication of hereditary cancer risk information within families, and cascade testing.

Data statement

The data underlying this study are not publicly available due to considerations of participant privacy but may be available from the corresponding author(s) upon reasonable request.

This work was presented in part as a poster at the Cornell University and Weill Cornell Medicine Intercampus Research Symposium on Hereditary Cancer and Genetics.

CRediT authorship contribution statement

Tina Karimaghaie: Data curation, Formal analysis, Investigation, Project administration, Validation, Visualization, Writing – original draft, Writing – review & editing. Genevieve Fasano: Conceptualization, Investigation, Methodology, Resources, Visualization, Writing – review & editing. Steve Lopez: Data curation, Formal analysis, Investigation, Project administration, Validation, Visualization, Writing – original draft, Writing – review & editing. Samantha Min: Data curation, Formal analysis, Investigation, Visualization, Writing – review & editing. Laura Keenahan: Data curation, Formal analysis, Investigation, Visualization, Writing – review & editing. Muhammad Danyal Ahsan: Data curation, Investigation, Resources, Writing – review & editing. Sue Friedman: Writing – review & editing. Emily S. Epstein: Writing – review & editing. Ravi N. Sharaf: Conceptualization, Methodology, Supervision, Validation, Writing – review & editing. Lisa Newman: Conceptualization, Investigation, Methodology, Resources, Supervision, Validation, Writing – review & editing. Melissa K. Frey: Conceptualization, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing – review & editing.

Funding statement

None.

Declaration of competing interest

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Melissa K Frey reports a relationship with Wndr Health that includes: consulting or advisory. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Appendix A. Supplementary data

Supplementary material