Even at the end of life, testing cancer patients for inherited susceptibility may provide life-saving information to their relatives. Prior research suggests palliative care inpatients have suboptimal understanding of genetic importance, and testing may be underutilized in this clinical setting. These conclusions are based on limited research. This study aimed to estimate genetic testing prevalence among high-risk palliative care patients in a National Cancer Institute-designated comprehensive cancer center. We also aimed to understand these patients' understanding of, and attitudes toward, hereditary cancer testing and DNA banking. Palliative care in-patients with cancer completed structured interviews, and their medical records were reviewed. Among patients at high risk for hereditary cancer, we assessed history of genetic testing/DNA banking; and related knowledge and attitudes. Among 24 high-risk patients, 14 (58.3%) said they/their relatives had genetic testing or they had been referred for a genetics consultation. Of the remaining 10 patients, seven (70%) said they would "probably" or "definitely" get tested. Patients who had not had testing were least concerned about the impact of future testing on their family relationships; two (20%) said they were "extremely concerned" about privacy related to genetic testing. Of patients without prior testing, five (50%) said they had heard or read "a fair amount" about genetic testing. No high-risk patients had banked DNA. Overall, 23 (95.8%) said they had heard or read "almost nothing" or "relatively little" about DNA banking. Written materials and clinician discussion were most preferred ways to learn about genetic testing and DNA banking. Overall, this study demonstrates underutilization of genetics services at the end of life continues to be problematic, despite high patient interest.
At an academic center, 25% of patients had no family history documented in the EMR. And, 32% of pedigrees warranted referral to genetic services, which was rarely documented. There is substantial room for quality improvement for oncologists and PC specialists-often the last set of providers-to address family cancer risk before death and to increase use and ease of documenting family history in the EMR. Addressing cancer family history could enhance prevention, especially among high-risk families.
56 Background: Hereditary cancer (CA) assessment & communication about family history (FH) risks in palliative care are underexplored & could be critical for surviving relatives. FH may not be adequately reviewed & appropriate information conveyed in the palliative care (PC) setting, even though family health is a legacy concern of patients. Cancer patients seeking PC never wish for their relatives to have CA & may be an important resource for communication about their relative’s CA risk & appropriate referrals. Methods: This prospective observational study among cancer patients receiving PC consultations was conducted at a 977-bed academic urban hospital between June 2016 & March 2017. Data were collected through structured interviews and chart review during hospitalizations. Results: 75 adult cancer patients were enrolled. Patients’ average age at diagnosis was 55.3 ± 15.7 years. 41(55%) self-identified as male; 34(45%) as female; 20(27%) as black, 49 (65%) white, and 6(8%) other. 24 patients (32%) were considered to have pedigrees that merited referral as high-risk. 32 patients (43%) thought that their CA had a likely genetic or inherited component. 48(64%) thought the palliative care setting was an appropriate place to discuss the implications. The mean comfort level in addressing these questions was 8.7 on a 10 point scale with 10 indicating extremely comfortable. Conclusions: Review of FH may be an intervention that PC providers & families can discuss & incorporate in legacy activities. This could enhance CA prevention, especially among high-risk families. There is room for enhancement in how FH & patient and family concern are integrated in the palliative & cancer care continuum.
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