Presenter: Mintallah Haider MD | Moffitt Cancer Center Background: Outreach and community engagement are critical activities for elevating the quality of cancer care across geographic regions. These include patient-specific initiatives geared to improve the patient experience throughout the continuum of cancer care. However, the interest in related topics and motivation to engage in these initiatives, from a patient’s perspective, is unknown. The goal of this study was to examine the specific interests and preferences regarding outreach activities in patients with hepatobiliary tumors. Methods: A cross-sectional survey study was performed and included patients evaluated by the hepatobiliary team at an NCI-designated comprehensive cancer center. Survey questions (43) were developed to cover 3 a-priori domains of interest: informational needs, interest in participation, and community engagement. A purposeful sampling strategy derived from the institutional weekly liver-specific tumor board (2015-2019) was used for patient recruitment, and survey administration was done using Dilman’s Tailored Design Method, including timed mailing requests for voluntary participation with a USD10 incentive. Based on the question types (5-point Likert scale and open-ended questions), quantitative and qualitative analyses were performed and grouped by domain. Results: 169 patients were identified with 70 completing the survey (41.4% response rate). The majority of patients had hepatocellular carcinoma (HCC – 43%), followed by cholangiocarcinoma (CCA – 36%) and other primary tumors (20%). Over 65% of patients ranked cancer treatment as the primary informational need and topic of interest followed by symptom management (62%), nutrition (52%), physical activity (47%), with survivorship, emotional well-being and others ranking lower in priority, and with no difference in distribution by disease types (p>0.05). Notably, the majority of patients (HCC 75%, CCA 90%) expressed informational need related to screening programs. Though up to 85% of patients were aware of multidisciplinary tumor board involvement with their care, less than 16% understood its dynamics and how decisions informed their care. 80% of patients expressed interest in participating in outreach activities and receiving education, with the vast majority (81%) having a preference for digital content over in-person events. Similarly, 82% expressed no interest in attending a conference and less than 10% would engage as speakers/panelists within a conference format. In terms of schedule, the frequency of outreach was noted to be preferred in a quarterly or annual basis. If a conference were to be planned, the majority of patients (80%) preferred it to last 1-2 hours on a weekday rather than an extended weekend event. Conclusion: Significant resources are delegated to designing and implementing community outreach; however, this is not always based on identified parameters and preferences within the community. Patients with HCC/CCA express a keen interest in learning about their cancer diagnoses. There is an identified gap in understanding how risk factors are implemented into a screening program for hepatobiliary tumors. There is also an identified opportunity to better define the role, outcome and implementation of tumor board review. Specific to this community, these programs are best designed in a modality that is received by the patient in their environment, whether electronic or mailed. These findings can inform future outreach direction.
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Mar 11, 2021
Paul Ghaly + 2
Open Access