Related Experiment Videos
Stakeholders' Perceptions and Information Needs Regarding Research Medical Donation
Andrew S Epstein1, Jada G Hamilton1, Elyse Shuk2
1Memorial Sloan Kettering Cancer Center, New York, New York, USA; Weill Cornell Medical College, New York, New York, USA.
Journal of Pain and Symptom Management
|July 15, 2019
Summary
Research Medical Donation (RMD) is valuable for cancer research, especially for rare cancers. Improving awareness and sensitivity in end-of-life care communication is key to RMD program success.
Area of Science:
- Oncology
- Medical Ethics
- Biobanking
Background:
- Research Medical Donation (RMD) collects human tissue post-mortem for cancer research.
- Limited data exists on institutional barriers to patient accrual in RMD programs.
Purpose of the Study:
- To gather stakeholder perspectives on the RMD process.
- To identify challenges and needs for effective RMD program implementation.
- To inform sensitive communication and timely tissue procurement in RMD.
Main Methods:
- Eight teleconference focus groups engaged stakeholders: cancer clinicians, patients, and caregivers.
- Qualitative analysis of transcripts identified common and divergent themes.
- Participants included 13 clinicians, 24 patients, and 8 caregivers across breast, pancreatic, and lung cancer groups.
Main Results:
- Limited prior knowledge of RMD among clinicians and patients.
- RMD perceived primarily as beneficial for research.
- Concerns identified regarding logistics, privacy, and sensitive timing of RMD discussions.
- Willingness to participate in RMD associated with rare/virulent cancer types.
Conclusions:
- Patients, families, and clinicians show low RMD awareness but value its contribution to scientific advancement.
- RMD implementation requires individualized sensitivity to end-of-life care.
- Training programs for clinical staff are recommended to improve RMD processes.