Data from: Comparing knowledge and perceptions of palliative care among neuro-oncology patients, caregivers, and providers to a representative U.S. sample

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  • This IRB-exempt study involved an online anonymous questionnaire, utilizing questions from the HINTS, that could be completed in under 5 minutes during a routine clinic visit. An electronic survey was distributed to PBT patients, caregivers, and medical providers, that included questions regarding PC from the Health Information National Trends Survey (HINTS). To ensure participant privacy, no protected health information from any of the three study groups was collected, and identifiable personal information was not gathered. A validated instrument of 9 questions was used, with the first 6 questions addressing knowledge of PC, and the last 3 questions addressing perceptions about PC. Since this was an IRB-exempt, quality improvement project, we did not create unique identifiers to link patients with their caregiver's responses. Hence, patients, caregivers, and providers were treated as three independent groups in analyses. ... [Read More]

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Data Citation
  • Johnson, M. O., Kim, J-Y., Dalton, J. C., Cort, N., Herndon, J. E., Affronti, M. L., Peters, K. B., Jones, C. A. (2024). Data from: Comparing knowledge and perceptions of palliative care among neuro-oncology patients, caregivers, and providers to a representative U.S. sample. Duke Research Data Repository. https://doi.org/10.7924/r40s0030b
DOI
  • 10.7924/r40s0030b
Publication Date
ARK
  • ark:/87924/r40s0030b
Collection Dates
  • August 2020-November 2020
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Related Materials
  • Johnson, M.O., Khasraw, M., Kim, J-Y., Cort, N., Herndon, J.E., Ramirez, L., Lipp, E.S., Landi, D.B., Desjardins, A., Friedman, H.S., Ashley, D.M., Affronti, M.L., Casarett, D.J., Peters, K.B. QOLP-28. Comparing knowledge of and beliefs about palliative care among neuro-oncology patients, caregivers, providers and a nationally-representative U.S. sample. Abstract from the 2021 Society for Neuro-Oncology's 25th Annual Scientific Meeting and Education Day, November 18-21, 2021, Hynes Convention Center, Boston, MA, In Neuro-Oncol., 23(suppl.6):vi189, 2021.  https://doi.org/10.1093/neuonc/noab196.748
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  • Data from: Comparing knowledge and perceptions of palliative care among neuro-oncology patients, caregivers, and providers to a representative U.S. sample
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Thumbnail Title Date Uploaded Actions
file details Overall GAPP Data deidentifed.xlsx 2024-06-20 Public Download
file details Patient_caregiver_provider_ Survey Questions.pdf 2024-06-20 Public Download
file details README.pdf 2024-06-20 Public Download

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