Stakeholder perceptions of thoracic rapid tissue donation: An exploratory study.
Jessica McIntyre, Christie Pratt, Rebecca D Pentz, Eric B Haura, Gwendolyn P Quinn, FORWARD
Author Information
Jessica McIntyre: Cancer Prevention and Control, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA.
Christie Pratt: Thoracic Oncology Program, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA.
Rebecca D Pentz: Emory University School of Medicine, 201 Dowman Drive, Atlanta, GA 30322, USA.
Eric B Haura: Thoracic Oncology Program, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA; College of Medicine, Department of Oncologic Science, University of South Florida, 12901 Bruce B. Downs Boulevard, MDC 44, Tampa, FL 33612, USA.
Gwendolyn P Quinn: Cancer Prevention and Control, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA; College of Medicine, Department of Oncologic Science, University of South Florida, 12901 Bruce B. Downs Boulevard, MDC 44, Tampa, FL 33612, USA. Electronic address: Gwen.quinn@moffitt.org.
Rapid autopsy or rapid tissue donation (RTD) is a novel method of tissue procurement in which 'fresh' tissue is collected within 2-6 h following the death of a patient. While the use of RTD offers many opportunities to develop new therapies for lung cancer patients, it raises ethical concerns. The purpose of this study was to examine knowledge, perceptions and ethical concerns about recruiting patients for an RTD program. To achieve research goals, we conducted six focus groups, each containing 5-10 participants (N = 38). Participants were cancer patients (n = 17) their caregivers (n = 6), physicians (n = 6) and clinic staff (n = 9) from the Thoracic Oncology Program at Moffitt Cancer Center, in Tampa, Florida, USA. All focus groups were audio-recorded and conducted using a semi-structured focus group guide. The transcripts were analyzed using hand-coding methods. Data were coded independently by at least two researchers, and an inter-rater reliability rate of ≥90% was achieved. Knowledge about RTD was low among all groups, with physicians having slightly higher knowledge; all groups agreed that RTD offered major benefits to cancer research; physicians and clinic staff were mainly concerned about making a patient feel uncomfortable and reducing hope, while, patients and family members were more concerned about logistics and how the family would be affected during tissue retrieval. All groups agreed the physician was the appropriate person to begin a discussion about RTD and that recruitment should be individualized. All groups reported that physician training is necessary, as well as an awareness campaign for patients and families to be more receptive about RTD. The results of this study suggested more education is needed for all stakeholders to learn about RTD prior to the initiation of a research program. Our approach of querying all stakeholders provides a firm foundation for future training modules regarding RTD programs in lung cancer.
