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Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education
- Source :
- PLoS ONE, Vol 16, Iss 2, p e0246686 (2021), PLoS ONE
- Publication Year :
- 2021
- Publisher :
- Public Library of Science (PLoS), 2021.
-
Abstract
- Patients consented to biobanking studies typically do not specify research conducted on their samples and data. Our objective was to gauge cancer biobanking participant preferences on research topics. Patient-participants of a biobanking study at a comprehensive cancer center who had an appointment within the last 5 years, had a valid email address, and with a last known vital status of alive, were emailed a newsletter containing a link to a survey about preferences and priorities for research. The survey assessed demographics and research interest in three domains: cancer site, cancer-related topics, and issues faced by cancer patients. 37,384 participants were contacted through email to participate in the survey. 16,158 participants (43.2%) opened the email, 1,626 (4.3% overall, 10% of those who opened the email) completed the survey, and 1,291 (79.4% of those who completed the survey) selected at least one research priority. Among those who selected at least one research priorities for cancer-relevant topics, the most commonly selected were cancer treatment (66%), clinical trials (54%), and cancer prevention (53%). Similarly, the most selected priorities for cancer-related issues faced by patients were physical side effects of cancer (57%), talking to the oncologist (53%), and emotional challenges due to cancer (47%). Differences by gender were observed, with females reporting more interest in research generally. Cancer patients participating in a biobanking protocol prioritized research on treatments, prevention and side effects, which varied by gender.
- Subjects :
- Male
Skin Neoplasms
Lung and Intrathoracic Tumors
0302 clinical medicine
Email address
Neoplasms
Surveys and Questionnaires
Breast Tumors
Medicine and Health Sciences
Registries
030212 general & internal medicine
Young adult
Skin Tumors
Biological Specimen Banks
Aged, 80 and over
Multidisciplinary
Electronic Mail
Prostate Cancer
Prostate Diseases
Patient Preference
Middle Aged
Biobank
Oncology
Nephrology
Renal Cancer
030220 oncology & carcinogenesis
Scale (social sciences)
Medicine
Female
Research Article
Adult
medicine.medical_specialty
Adolescent
Urology
Science
MEDLINE
Dermatology
Education
Young Adult
03 medical and health sciences
Breast Cancer
medicine
Humans
Aged
Colorectal Cancer
Cancer prevention
business.industry
Research
Cancers and Neoplasms
Cancer
medicine.disease
Clinical trial
Genitourinary Tract Tumors
Head and Neck Cancers
Family medicine
business
Subjects
Details
- ISSN :
- 19326203
- Volume :
- 16
- Database :
- OpenAIRE
- Journal :
- PLOS ONE
- Accession number :
- edsair.doi.dedup.....3ce8bbd9c26dd9c6074f15b43af4215e