Search

10613 Background: Patients with paraganglioma/pheochromocytoma (PPGL) or hereditary predisposition to PPGL often need screening with biochemical labs, imaging and physical exam. Given the rarity of PPGL and hereditary PPGL, care is often provided through specialty centers. Subsequently, patients may have experienced restrictions on travel and delayed scheduling of non-elective procedures due to COVID-19. This study aimed to analyze the impact of COVID-19 on seeking PPGL management. Methods: Patients with a personal history of PPGL or hereditary PPGL risk from the University of Michigan, Brigham Women’s Hospital, and Huntsman Cancer Institute were sent a survey in 2021. The survey included questions regarding tumor history (Y/N), gene status, demographics, and experience with COVID. The survey assessed whether they missed any exams related to PPGL diagnosis or screening. Comparative analyses utilized regression and chi-square tests. Patient factors measured in analyses evaluated COVID surveillance (labs, imaging, doctor visit) as the primary outcome and age, institution, gene status, sex, and PPGL history as predicting variables. Results: In total, 241 respondents across three institutions completed the survey. The cohort was primarily female (n = 158, 65.6%). A majority of the cohort identified as White (n = 222, 92%) and non-Hispanic (n = 226, 93.8%). PPGL history was reported in 158 patients (65.6%), 43 of which were pheochromocytoma and 113 were paraganglioma, primarily in the head and neck (n = 78). At time of survey completion, 209 (87%) respondents answered COVID-related questions. Thirty-nine respondents (19.2%) reported missing doctor visits, while 31 (15.3%) report missing HPPGL imaging and 33 (16.3%) report missing lab tests. There were no differences by institution (p > 0.05) on patient reported missed visits. Logistic regression analysis showed no difference in missing visits based on having a hereditary PPGL predisposition gene or sex of respondent (all p-values > 0.05). There was no difference based on PPGL history, though it is unknown if patients missed PGL follow-up or screening. Individuals who missed imaging (Y/N) were more likely to report missing their lab tests (OR = 1.8, p < 0.01) and doctor visit (OR = 1.25, p < 0.01). Age was a significant predictor for missing doctor visits (p = 0.02) with an odds ratio of 1.002 per 1 year increase in age. Conclusions: Though institutions had different COVID-19 restrictions and guidelines by state, there was no difference on missing surveillance or screening. Over 15% of respondents reported missing at least one aspect of PPGL care, indicating a need to re-engage those with PPGL and hereditary PPGL to return to typical screening and surveillance. Patients who miss one aspect of surveillance are likely to have missed other aspects of surveillance and will require evaluation of all aspects of screening to return up to date on needed visits and procedures.

5061 Background: Expanded germline genetic testing recommendations for individuals with prostate cancer (PCa) have resulted in increased demand for pre-test genetic education. As a result, alternative service delivery models in genetic counseling (GC) have been suggested. Previous research has shown no difference in genetic testing uptake when video genetic education (VGE) is used rather than face-to-face counseling. However, data is limited when evaluating how VGE is delivered to patients. This study aimed to evaluate the impact of pre-test VGE on genetic testing uptake when facilitated by a GC assistant or self-completed by the patient. Methods: PCa patients referred for GC were contacted for pre-test VGE. Patients were randomized to undergo VGE with a GC assistant via Zoom (assistant-led) or perform VGE on their own via email instructions (patient-led). Assistant-led VGE was scheduled via standard of care, and patient-led VGE involved electronic and phone contact. In both arms, pre-test VGE included administrating family history collection via electronic software and viewing of informational genetics video. VGE completion and genetic testing uptake was the primary outcome measured for all participants. Initial pilot data was presented previously. This analysis represents the entire study period outcome. Data analysis used t-test, Fisher’s exact and chi square. Results: From 10/1/2020-12/31/2021, 266 PCa patients were referred. In total, 254 were randomized, with 130 in the assistant-led intervention and 124 randomized to the patient-led arm. Technological limitations, loss to follow up, and procedural withdrawals resulted in 41 (31.5%) patients in the assistant-led arm and 65 (52.4%) in the self-led arm. The primary reason for discontinuing the process was lack of patient response to contact to schedule their genetics visit (n = 109, 35 patient-led, 74 assistant-led). There was significantly more loss to follow up in the assistant-led arm versus the self-led arm (p < 0.001). Of those who completed VGE, the median age was 66 years, with no difference between the two arms (p = 0.66). Participants primary identified as white (n = 96, 91%) and non-Hispanic (n = 100, 94%). There was no difference in uptake of genetic testing (p = 0.09) between patient and assistant led VGE. Conclusions: A randomized intervention suggests no difference in genetic testing uptake when pre-test VGE occurs with an assistant or is patient-led. Analyses of satisfaction, decision conflict, and knowledge are needed to evaluate if patient-led VGE is a suitable alternative to GC. Loss to follow up given standard of care scheduling approaches for assistant-led VGE suggests pre-test VGE may be better delivered during oncology visits. Additional evaluation of the facilitators and barriers, in addition to larger multi-center studies, are required to consider patient-led pre-test VGE as a primary method of pre-testing genetic education.

1545 Background: Patients with germline pathogenic variants (PVs) in the SDHx genes have increased risk for paragangliomas/pheochromocytomas (PGL/PCC), renal cell carcinomas, and gastrointestinal stromal tumors. Expert recommendation suggests individuals with SDHx PVs undergo biennial whole-body imaging and annual biochemical testing. This study aimed to evaluate tumor detection rate using standard biochemical and imaging protocols for individuals with SDHx PVs, particularly in those with and without SDHx-related tumor history, and in those with biochemical testing data. Methods: A retrospective longitudinal observational study at the Universities of Michigan, Pennsylvania, and Utah Huntsman Cancer Institute was conducted from the start of each center’s screening program through March 1, 2018. Individuals with SDHx PVs had clinical imaging with whole body MRI/CT and biochemical testing per expert recommendation. SDHx-related tumors identified during clinical screening were measured. Results: A total of 263 individuals with SDHx PVs completed 491 screens. Individuals with SDHB PVs were the most prevalent (n = 188, 71.5%). The average number of screens per subject was 1.87 (range 1-7). A majority (n = 194, 73.7%) of individuals did not have a prior history of PGL/PCC. Overall, SDHx-related tumors were detected in 17.1% (n = 45) of the cohort. Of the 46 scans that identified an SDHx-related tumor, 85% of them (n = 39) were baseline scans. SDHx-related tumors were identified in 18.6% (n = 36/194) of individuals that did not have a prior history of PGL/PCC, whereas they were identified in 13.0% (n = 9/69) of individuals that did have a prior history of PGL/PCC (p = 0.39). Biochemical testing was available for 70% (n = 343) of imaging screens, of which 18% (n = 61) had positive biochemistry. Of those with positive biochemistry, 19 tumors were identified on imaging (6%). Sixteen tumors were identified on imaging with negative biochemistry (5%) with a sensitivity of 54% and a specificity of 94%. Utilizing a cut-off of two times the upper limit of normal, 9.91% (n = 34) biochemical tests were positive, and 15 (44.12%) had an SDHx-related tumor on corresponding imaging. Conclusions: Current SDHx screening protocols are effective at identifying SDHx-related tumors. Tumors were detected in subjects with a prior history of PGL/PCC and those with no prior history. This suggests life-long screening is important for all SDHx carriers. Imaging is a crucial piece of SDHx screening given biochemical testing’s sensitivity and specificity.