Objective: This study was designed to increase our understanding of parents' experiences managing the needs of their children with cystic fibrosis (CF) and to identify potential gaps in services. Method: We used grounded dimensional analysis of anonymous survey data obtained from a quality improvement initiative conducted by the Cystic Fibrosis Foundation (CFF). The Patient and Family Experience of Care (PFEC) survey was administered continuously at 125 CF care centers throughout the United States in 2017. The subsample of data for this study was completed by 80 parents/caregivers of children with CF (younger than 18 years). Results: Two unifying themes emerged from parents' survey responses: (1) parents' expertise expands continually as they learn and adapt to changes in their children's maturity or health and (2) parental expertise is sometimes visible or invisible to clinicians. Parents' expertise evolved with their children's development. Visible to care teams was at-home care, e.g., respiratory treatments and medications. Less visible were intangible management activities, e.g., social processes, emotions, and concerns that were omnipresent for parents but seldom disclosed to or seen/recognized by clinicians. Themes, such as the quality of encounters with care teams, progressive nature of CF, and hope derived from advances in research, were associated with specific contextual factors. Conclusion: The findings expand our understanding of lived parental experiences of CF across childhood and offer direction for future quality improvement and research. Online parent surveys offer a valuable tool to identify unmet needs across subgroups of families affected by chronic childhood health conditions.

Introduction Advances in genetic testing have contributed to improvements in our approach to early detection, prevention, and treatment of breast cancer. All populations, however, have not equally benefited from the scientific advances. Cancer genetic testing can directly impact the health and wellbeing of entire families. Uptake of cancer genetic testing continues to be significantly lower among Black patients with unequal access, fear, and medical mistrust all contributing to this disparity. Objective: To address the racial disparity in genetic testing uptake we are developing a short patient-centered video intervention to inform, educate, and encourage Black women and men to consider genetic testing when recommended by a provider. Methods To begin, we created a 15-minute video using data from a recently completed video-based qualitative interview study that included 47 people who have a known genetic or inherited cancer risk. We reviewed coded transcripts of participants’ study videos, with a prioritization of the perspectives of the Black participants about learning about their cancer risk due to a hereditary predisposition, their decision making around genetic testing, and testing experiences. From this review, we created a montage video of short segments from 9 patients (4 of whom were Black). Next, we conducted qualitative stakeholder interviews with 10 Black patients who had undergone genetic testing for cancer within the last year and 10 oncologists and genetic counselors involved in genetic testing (mix of Black and non-Black providers). All participants were made aware that our goal is to develop a video intervention. Interviews were conducted via zoom, with interviewees being shown the montage in segments, followed by questions about why people choose to test (or not), barriers to and concerns around testing. We also asked for thoughts about what information might be important to improve chances of uptake of genetic testing for Black patients. Participants were also asked about whether patient-centered videos were an appropriate intervention strategy, and if so, the preferred voices and messages to be included. Results Initial analysis of the qualitative interviews shows strong support for an intervention focused on patient-centered videos, indicating possible acceptability and clinical utility of this approach. Relatability and representation were mentioned as key, though there was not agreement as to whether all patients need to be Black in an intervention targeting a Black audience. Patients described appreciating seeing other patients discuss genetic testing as a mechanism to reduce risk by facilitating early detection. Patients also felt that describing possible benefits for children and future generations could be a powerful message, and noted that given the widespread fear of cancer, the authenticity of the patients’ perspectives could provide important reassurance. In contrast, patient discussions of their specific problems with insurance and other barriers to testing were identified as possibly problematic for this approach, without explicit identification of solutions. Both providers and patients identified a need for factual information about inherited cancer risk, and the processes and implications of genetic testing alongside experiential content. Patients may not be best placed to deliver such information as it is usually outside of their expertise. Conclusions This developmental work suggests the potential impact of incorporating the patient voice into interventions to increase uptake of cancer genetic testing. Based on this work, we are planning to interview more patients to develop a video-based intervention that will combine information around inherited risk, testing, finances and implications of testing and patients’ perspectives that will then be evaluated in a randomized clinical trial. Citation Format: Katherine C. Smith, Rachel Grob, Avonne Connor, Amanda S. Matchette, Grace-Ann Fasaye, Betty J. May, Michelle McCollough, Emily Warne, Jessica Roth, Kala Visvanathan. Developing a Patient-Centered Video Intervention to Improve Uptake of Genetic Testing for Cancer Among Black Americans: The Stakeholder’s Perspective [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-08-02.

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