Literature DB >> 24355468

Stakeholder perceptions of thoracic rapid tissue donation: An exploratory study.

Jessica McIntyre1, Christie Pratt2, Rebecca D Pentz3, Eric B Haura4, Gwendolyn P Quinn5.   

Abstract

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.
Copyright © 2013 Elsevier Ltd. All rights reserved.

Entities:  

Keywords:  Health care providers; Oncology; Rapid autopsy; Rapid tissue donation; Survey; Tissue donation; USA

Mesh:

Year:  2013        PMID: 24355468      PMCID: PMC3869974          DOI: 10.1016/j.socscimed.2013.08.035

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  23 in total

1.  Revisiting ethical guidelines for research with terminal wean and brain-dead participants.

Authors:  Rebecca D Pentz; Anne L Flamm; Renata Pasqualini; Christopher J Logothetis; Wadih Arap
Journal:  Hastings Cent Rep       Date:  2003 Jan-Feb       Impact factor: 2.683

Review 2.  The physician's role in discussing organ donation with families.

Authors:  Michael A Williams; Pamela A Lipsett; Cynda H Rushton; Eugene C Grochowski; Ivor D Berkowitz; Stephen L Mann; John H Shatzer; M Priscilla Short; Myron Genel
Journal:  Crit Care Med       Date:  2003-05       Impact factor: 7.598

3.  Does it matter who requests necropsies? Prospective study of effect of clinical audit on rate of requests.

Authors:  I S Kamal; D R Forsyth; J R Jones
Journal:  BMJ       Date:  1997-06-14

4.  Rapid ("warm") autopsy study for procurement of metastatic prostate cancer.

Authors:  M A Rubin; M Putzi; N Mucci; D C Smith; K Wojno; S Korenchuk; K J Pienta
Journal:  Clin Cancer Res       Date:  2000-03       Impact factor: 12.531

5.  Factors influencing decisions about donation of the brain for research purposes.

Authors:  M Stevens
Journal:  Age Ageing       Date:  1998-09       Impact factor: 10.668

6.  Rapid brain autopsy. The Joseph and Kathleen Bryan Alzheimer's Disease Research Center experience.

Authors:  C M Hulette; K A Welsh-Bohmer; B Crain; M H Szymanski; N O Sinclaire; A D Roses
Journal:  Arch Pathol Lab Med       Date:  1997-06       Impact factor: 5.534

7.  Maintaining integrity in the face of death: a grounded theory to explain the perspectives of people affected by lung cancer about the expression of wishes for end of life care.

Authors:  Gillian Horne; Jane Seymour; Sheila Payne
Journal:  Int J Nurs Stud       Date:  2011-12-29       Impact factor: 5.837

8.  Androgen-independent prostate cancer is a heterogeneous group of diseases: lessons from a rapid autopsy program.

Authors:  Rajal B Shah; Rohit Mehra; Arul M Chinnaiyan; Ronglai Shen; Debashis Ghosh; Ming Zhou; Gary R Macvicar; Soorynarayana Varambally; Jason Harwood; Tarek A Bismar; Robert Kim; Mark A Rubin; Kenneth J Pienta
Journal:  Cancer Res       Date:  2004-12-15       Impact factor: 12.701

Review 9.  Report from the CDC. Telephone focus groups: an emerging method in public health research.

Authors:  Crystale Purvis Cooper; Cynthia M Jorgensen; Tracie L Merritt
Journal:  J Womens Health (Larchmt)       Date:  2003-12       Impact factor: 2.681

10.  Lessons from our patients: development of a warm autopsy program.

Authors:  Kathleen Oare Lindell; Judith A Erlen; Naftali Kaminski
Journal:  PLoS Med       Date:  2006-07       Impact factor: 11.069

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  5 in total

1.  Stakeholders' Perceptions and Information Needs Regarding Research Medical Donation.

Authors:  Andrew S Epstein; Jada G Hamilton; Elyse Shuk; Danielle R Romano; Kathleen Lynch; Erva Khan; Margaux Genoff; Chelsea Michael; Christine Iacobuzio-Donahue
Journal:  J Pain Symptom Manage       Date:  2019-07-11       Impact factor: 3.612

2.  A survey of health care professionals and oncology patients at the McGill University Health Centre reveals enthusiasm for establishing a postmortem rapid tissue donation program.

Authors:  M Dankner; J Senecal; N S Neubarth; N Bertos; M Park; B Issa-Chergui; J Asselah; P M Siegel; N Bouganim
Journal:  Curr Oncol       Date:  2019-08-01       Impact factor: 3.677

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

Authors:  Gwendolyn P Quinn; Rebecca D Pentz; Teresita Muñoz-Antonia; Theresa A Boyle; Matthew B Schabath; Christie L Pratt; Andrea Shaffer; Luisa F Duarte; Meghan Bowman-Curci; Scott J Antonia; Alberto A Chiappori; Benjamin C Creelan; Jhanelle E Gray; Charles C Williams; Eric B Haura
Journal:  Patient Educ Couns       Date:  2017-11-28

Review 4.  The sociology of cancer: a decade of research.

Authors:  Anne Kerr; Emily Ross; Gwen Jacques; Sarah Cunningham-Burley
Journal:  Sociol Health Illn       Date:  2018-02-15

Review 5.  Post-mortem tissue donation programs as platforms to accelerate cancer research.

Authors:  Matthew Dankner; Badia Issa-Chergui; Nathaniel Bouganim
Journal:  J Pathol Clin Res       Date:  2020-03-21
  5 in total

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