Patient, caregiver and physician perspectives on participating in a thoracic rapid tissue donation program

• Published in: Patient education and counseling Vol. 101; no. 4; pp. 703 - 710
• Main Authors: Quinn, Gwendolyn P., Pentz, Rebecca D., Muñoz-Antonia, Teresita, Boyle, Theresa A., Schabath, Matthew B., Pratt, Christie L., Shaffer, Andrea, Duarte, Luisa F., Bowman-Curci, Meghan, Antonia, Scott J., Chiappori, Alberto A., Creelan, Benjamin C., Gray, Jhanelle E., Williams, Charles C., Haura, Eric B.
• Format: Journal Article
• Language: English
• Published: Ireland Elsevier B.V 01.04.2018
• Subjects: Aged; Attitude of Health Personnel; Cancer; Caregivers - psychology; Decision Making; Ethics; Family - psychology; Female; Florida; Humans; Interviews as Topic; Lung Neoplasms - psychology; Male; Middle Aged; Patient recruitment; Patient Selection; Physicians - psychology; Qualitative; Qualitative Research; Rapid autopsy; Rapid tissue donation; Tissue and Organ Procurement; Florida; Ethics; Rapid autopsy; Rapid tissue donation; Qualitative; Patient recruitment; Cancer
• ISSN: 0738-3991; 1873-5134; 1873-5134
• DOI: 10.1016/j.pec.2017.11.014

•Rapid Tissue Donation (RTD) recruitment poses several ethical challenges.•Exploring patient and family perspectives is critical for successful implementation.•A key factor for RTD success is to tailor program to the emotional needs of all involved.•Results suggest establishing a RTD program is feasible. The collection of posthumous tissue from advanced stage lung cancer patients is beneficial to medical science. Recruiting living patients to a Rapid Tissue Donation Program (RTD) poses several psychosocial challenges and little is known about perceptions of joining this type of program. This study qualitatively examined perceptions of advanced stage lung cancer patients (n=14) participating in a lung cancer RTD program, their NoK (n=11), and physicians (n=6) at the Thoracic Oncology Clinic at H. Lee Moffitt Cancer Center & Research Institute, Tampa, Florida USA. Semi-structured interviews were conducted with participants and interview transcripts were analyzed using the constant comparison method. Majority of patients joined to give back to research, discussed participation with family members, and desired for family to receive information about the use of the tissue after their death. All participating NoK were supportive of their family member’s decision. Physicians described the program as running smoothly, but provided suggestions for process improvements. Participants joined with intention to give back to research community and families were supportive of loved one’s participation in RTD. Physicians agreed with overall process. Key factors for a successful RTD program is tailoring to institutional and individual needs.