Informed Consent and Decision Making for Upper Extremity VCA

B. Kuramitsu¹, C. Berumen¹, A. Ferzola², H. Sung², C. Kim³, D. Scarton³, T. McHugh³, A. Schultheis³, T. Riggleman³, J. Taylor³, M. Henderson², G. Brandacher², S. Tintle³, E. Gordon¹

¹Northwestern U Feinberg Sch of Medicine, Chicago, IL, ²Johns Hopkins School of Medicine, Baltimore, MD, ³Walter Reed National Military Medical Center, Bethesda, MD

Meeting: 2020 American Transplant Congress

Abstract number: D-234

Keywords: Ethics, Patient education, Psychosocial

Session Information

Session Name: Poster Session D: VCA

Session Type: Poster Session

Date: Saturday, May 30, 2020

Session Time: 3:15pm-4:00pm

Presentation Time: 3:30pm-4:00pm

Location: Virtual

*Purpose: The field of upper rxtremity (UE) Vascularized Composite Allotransplantation (VCA) continues to advance with more patients undergoing the informed consent process each year. However, the informed consent process for UE VCA has not yet been standardized, and has not been empirically examined for its adequacy. Consequently, the amount, type, and personalization of information provided to patients about UE VCA likely varies. Such variation may potentially contribute to UE amputees being inadequately informed, under-prepared, and feeling undue pressure when considering this option.

*Methods: This paper examines the little known topic of UE amputees’ and VCA candidates’, participants’, and recipients’ perceptions of the informed consent and decision-making processes about UE VCA, as part of a broader Department of Defense-funded study. Patients’ narratives have been an underutilized resource in shaping the informed consent process.

*Results: We will have conducted in-depth interviews among UE amputees, UE VCA candidates, participants, and UE transplant recipients (n=5-20) at three geographically distinct transplant and/or rehabilitation centers. Interviews will focus on participants’ information needs, comprehension of information disclosed, perceptions of undue influence, and psychosocial factors affecting decision making for UE VCA. This paper will highlight informed consent elements distinct to UE VCA, as compared to other VCA organs and to solid organs.

*Conclusions: UE amputees’ insights can enable the informed consent process for UE VCA to become more patient-centered, and thereby help VCA candidates and participants become better prepared to undergo UE VCA. Our findings will be used to develop educational resources (e.g., a website, videos), which will provide comprehensive, standardized information to help potential recipients, their families, and the general public learn about UE VCA. Future research should assess differences in the informed consent and decision making processes across VCA organs.

To cite this abstract in AMA style:

Kuramitsu B, Berumen C, Ferzola A, Sung H, Kim C, Scarton D, McHugh T, Schultheis A, Riggleman T, Taylor J, Henderson M, Brandacher G, Tintle S, Gordon E. Informed Consent and Decision Making for Upper Extremity VCA [abstract]. Am J Transplant. 2020; 20 (suppl 3). https://atcmeetingabstracts.com/abstract/informed-consent-and-decision-making-for-upper-extremity-vca/. Accessed May 11, 2025.

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