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Consent and Family Approach

Thursday October 19, 2023 - 11:00 to 12:00

Room: South Seas Ballroom A/B

P1.1 Laryngotracheal transplant: Patient and caregivers’ beliefs and perceptions

Stephanie R. Cotton Zacharias, United States

Research Scientist
Center for Regenerative Biotherapeutics
Mayo Clinic

Abstract

Laryngotracheal transplant: Patient and caregivers’ beliefs and perceptions

Danielle Grandjean1, David Lott1,3, Stephanie Cotton-Zacharias1,3, Richard Sharp2, Susan Curtis2, Isabel Weir2.

1Research, Mayo Clinic, Scottsdale, AZ, United States; 2Biomedical Ethics, Mayo Clinic, Rochester, MN, United States; 3Otolaryngology, Mayo Clinic, Phoenix, AZ, United States

Introduction: Patients with laryngectomy or laryngeal/tracheal dysfunction have reported severe low quality of life and social isolation due to difficulties with speech, swallowing and breathing. Advances in surgical technique and immunosuppression allow the pursuit of transplantation for the purpose of improving quality of life and preserving human life. Thus, human laryngeal allotransplantation (LT) has become an area of high interest for patients with these conditions and those who care for them. At this time, no U.S. medical center has established a program to provide LT. There is a paucity of data regarding the ethical and psychosocial beliefs of LT candidates.

Objectives: The objective of this project was to explore LT candidate’s and their caregiver’s perspectives of the transplant process and expectations for potential outcomes. This information is necessary to inform and design a successful LT program and to care for LT patients in all phases of their transplant journey. Understanding the psychosocial dimensions, hopes and needs of this population will allow for a rich and informed ethical analysis in preparation for establishment of a LT program.

Materials and Methods: In-depth qualitative interviews were completed with potential candidates for LT and their caregivers. An experienced qualitative interviewer conducted semi-structured interviews to explore candidate’s and caregiver’s beliefs about potential benefits and risks of LT. Interviews explored candidate’s and caregiver’s decision process and motivations to ascertain if their decisions were informed, conflicted, or coerced. Interviews were completed via Zoom and recorded, then transcribed verbatim. NVivo was used to code the interview data, leading to the identification of emerging themes and allowing for further analysis of the data.

Discussion/Results: Eight LT candidates and their caregivers were recruited over 18 months. Semi-structured interviews were completed, exploring how candidates and caregivers weigh the risks and benefits of LT and delve into their understanding, especially any misconceptions, of the surgical process and potential outcomes. Data collected to date show high expectations for improvement of quality of life. Themes and insights will be presented and discussed.

Summary/conclusion: Exploring the perspectives of patients and caregivers will add significantly to the existing body of knowledge by providing a robust understanding of their motivations, values and expectations as they pursue the possibility of a LT. As we embark on the creation of a LT program, full understanding of patient’s and caregiver’s priorities and expectations for this novel, transformational procedure is critical for success. This evidence will contribute to the ethical case for offering LT as a treatment option.

We acknowledge the support from the Obaid Grant, Mayo Clinic Arizona..

Presentations by Stephanie R. Cotton Zacharias

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