More than 15% of patients at risk for rare cancers missed screenings during COVID
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CHICAGO — In rare hereditary cancers such as paraganglioma/pheochromocytoma, where patients travel for their care, COVID caused a disruption in their screening and treatments, according to a poster presented during ASCO Annual Meeting.
“Though up to 40% of paragangliomas and pheochromocytomas are due to a hereditary cause, this condition is still quite rare overall,” Samantha Greenberg, CGC, MPH, MS, of Huntsman Cancer Institute, University of Utah, said during her presentation. “As a result, oftentimes, patients travel to specialty care centers and, amidst COVID restrictions and the pandemic, we sought to analyze the impact of COVID on our patients’ experience with their routine care, which typically consists of a doctor visit, lab visit, lab testing, biochemical testing and some form of imaging.”
Greenberg and colleagues surveyed patients with a history of or hereditary risk for paraganglioma/pheochromocytoma at four institutions (n = 241). Thirty-nine respondents (19.2%) reported missing doctor’s appointments, 31 (15.3%) reported missing imaging and 33 (16.3%) reported missing lab tests.
“There were unique demographic representations across the four institutions. However, if you look at the rate of individuals who reported missing care, this did not differ by institution,” Greenberg said. “This is really unique, given that COVID restrictions were different and populations were different but we still didn’t really see an impact.”
Those who reported missing imaging were nearly twice as likely to miss lab tests (OR = 1.8; P < .01) and more likely to miss a physician visit as well (OR = 1.25; P < .01). Age predicted those who would miss physician visits (P = .02; OR = 1.002 per 1 year increase in age). Conversely, mutation status, sex and personal history of tumors did not impact the data.
“This suggests that these patients may have just fallen off completely and may be patients we need to get back into our system,” Greenberg said. “Provider outreach and re-engagement with these populations — not just for hereditary paraganglioma or rare tumors but also likely for other hereditary cancer syndromes or for patients who often have to travel for specialty care — means that we probably have some work to do in increasing outreach and re-engagement to bring these patients back up to speed and up to the screening and care they need.”
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Greenberg S, et al. Poster 10613. Presented at: ASCO Annual Meeting; June 3-7, 2022; Chicago.
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