High-Risk Palliative Care Patients’ Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking

John M. Quillin, Oluwabunmi Emidio, Brittany Ma, Lauryn Bailey, Thomas J Smith, In Guk Kang, Brandon J. Yu, Oluwafemi Patrick Owodunni, Mohammed Abusamaan, Abdul Rab Razzak, Joann N Bodurtha

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Pages (from-to)1-10
Number of pages10
JournalJournal of Genetic Counseling
DOIs
StateAccepted/In press - Dec 4 2017

Fingerprint

Palliative Care
Genetic Testing
DNA
Neoplasms
Genetic Services
National Cancer Institute (U.S.)
Family Relations
Privacy
Research
Medical Records
Inpatients
Referral and Consultation
Interviews

Keywords

  • Cancer
  • DNA banking
  • End of life
  • Genetic testing
  • Palliative care

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

High-Risk Palliative Care Patients’ Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking. / Quillin, John M.; Emidio, Oluwabunmi; Ma, Brittany; Bailey, Lauryn; Smith, Thomas J; Kang, In Guk; Yu, Brandon J.; Owodunni, Oluwafemi Patrick; Abusamaan, Mohammed; Razzak, Abdul Rab; Bodurtha, Joann N.

In: Journal of Genetic Counseling, 04.12.2017, p. 1-10.

Research output: Contribution to journalArticle

Quillin, John M. ; Emidio, Oluwabunmi ; Ma, Brittany ; Bailey, Lauryn ; Smith, Thomas J ; Kang, In Guk ; Yu, Brandon J. ; Owodunni, Oluwafemi Patrick ; Abusamaan, Mohammed ; Razzak, Abdul Rab ; Bodurtha, Joann N. / High-Risk Palliative Care Patients’ Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking. In: Journal of Genetic Counseling. 2017 ; pp. 1-10.
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abstract = "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.",
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