Perceptions of the Risks and Benefits of Upper Limb Transplantation among Individuals with Upper Limb Amputations

Jensen, Sally E.; Butt, Zeeshan; Heinemann, Allen W.; Magasi, Susan; Cella, David; Kuiken, Todd A.; Dumanian, Gregory A.

doi:10.1097/prs.0000000000000584

Cited by 8 publications

(11 citation statements)

References 8 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…37 We targeted a sample size of n = 50 to achieve theoretical saturation of the overall sample, as a range of 30 - 60 is recommended, 38–40 and to enable nonparametric statistics 38 of amputation characteristics relevant to patients’ perceptions of UE VCA as found in other research. 29…”

Section: Methodsmentioning

confidence: 99%

“…37 We targeted a sample size of n = 50 to achieve theoretical saturation of the overall sample, as a range of 30 -60 is recommended, [38][39][40] and to enable nonparametric statistics 38 of amputation characteristics relevant to patients' perceptions of UE VCA as found in other research. 29 We sent recruitment letters via mail and email to patients from each site's hand surgery outpatient clinics and JHU's UE VCA program. Research staff called patients thereafter to assess interest and schedule interviews.…”

Section: Sample Population and Recruitmentmentioning

confidence: 99%

“…15 A few studies have examined factors influencing interest in UE VCA, albeit using small samples. [29][30][31] No research has examined how individuals make decisions about whether to pursue UE VCA or patients' perceptions of informed consent for UE VCA.…”

mentioning

confidence: 99%

See 2 more Smart Citations

Ethical and Psychosocial Factors in the Decision-Making and Informed Consent Process for Upper Extremity Vascularized Composite Allotransplantation: A Mixed-Methods Study

Gordon

Gacki-Smith

Kuramitsu

et al. 2023

Transplantation Direct

View full text Add to dashboard Cite

Background. Although upper extremity (UE) vascularized composite allotransplantation (VCA) aims to improve quality of life, relatively few have been performed worldwide to support evidence-based treatment and informed decision-making. Methods. We qualitatively examined factors contributing to anticipated and actual decision-making about UE VCA and perceptions of the elements of informed consent among people with UE amputations, and UE VCA candidates, participants, and recipients through in-depth interviews. Thematic analysis was used to analyze qualitative data. Results. Fifty individuals participated; most were male (78%) and had a mean age of 45 y and a unilateral amputation (84%). One-third (35%) were “a lot” or “completely” willing to pursue UE VCA. UE VCA decision-making themes included the utility of UE VCA, psychosocial impact of UE VCA and amputation on individuals’ lives, altruism, and anticipated burden of UE VCA on lifestyle. Most respondents who underwent UE VCA evaluation (n = 8/10) perceived having no reasonable treatment alternatives. Generally, respondents (n = 50) recognized the potential for familial, societal, cultural, medical, and self-driven pressures to pursue UE VCA among individuals with amputations. Some (n = 9/50, 18%) reported personally feeling “a little,” “somewhat,” “a lot,” or “completely” pressured to pursue UE VCA. Respondents recommended that individuals be informed about the option of UE VCA near the amputation date. Conclusions. Our study identified psychosocial and other factors affecting decision-making about UE VCA, which should be addressed to enhance informed consent. Study participants’ perceptions and preferences about UE VCA suggest re-examination of assumptions guiding the UE VCA clinical evaluation process.

show abstract

Section: Methodsmentioning

confidence: 99%

Section: Sample Population and Recruitmentmentioning

confidence: 99%

See 1 more Smart Citation

Ethical and Psychosocial Factors in the Decision-Making and Informed Consent Process for Upper Extremity Vascularized Composite Allotransplantation: A Mixed-Methods Study

Gordon

Gacki-Smith

Kuramitsu

et al. 2023

Transplantation Direct

View full text Add to dashboard Cite

show abstract

“…Further, individuals maintained various definitions of “success” of upper extremity VCA ( Kinsley et al, 2021 ; Downey et al, 2022 ). Other research has examined patient’s perceptions of the risks and benefits of upper extremity VCA ( Jensen et al, 2014 ). In sum, these studies highlight the need for VCA transplant programs to inform potential upper extremity and other recipients about VCA as part of the informed consent process.…”

Section: Informed Consent and Potential Graft Loss (‘Exit-strategies’...mentioning

confidence: 99%

Psychosocial and bioethical challenges and developments for the future of vascularized composite allotransplantation: A scoping review and viewpoint of recent developments and clinical experiences in the field of vascularized composite allotransplantation

et al. 2022

View full text Add to dashboard Cite

Vascularized Composite Allotransplantation (VCA) has evolved in recent years, encompassing hand, face, uterus, penile, and lower extremity transplantation. Accordingly, without centralized oversight by United States Organ Procurement and Transplantation Network (OPTN) or European Programs, centers have developed their own practices and procedures that likely vary, and accordingly, present different levels of rigor to the evaluation process, internationally. The importance of psychosocial factors in the selection process and treatment course has been widely recognized, and therefore, several approaches have been developed to standardize and guide care of VCA candidates and recipients. We propose to develop an international multidisciplinary platform for the exchange of expertise that includes clinical, patient, and research perspectives. Patient perspectives would derive from peer education and the assessment of patient-reported outcomes. To establish a foundation for such a platform, future research should review and combine current VCA protocols, to develop the ethical framework for a standardized psychosocial evaluation and follow-up of VCA candidates and recipients. This review presents a comprehensive overview of recent results in the field of VCA, developments in structural aspects of VCA, and provides viewpoints driven from clinical experience.

show abstract

“… 14 – 16 Information disclosure can allay patients’ uncertainty about the range of potential UE VCA outcomes (i.e., functional, psychosocial, health risks). 17 – 19 Failure to meet a recipient’s expected outcomes in the past has led to psychosocial disorders, suicide, and requests from the recipient to re-amputate their transplanted limb. 20 Little is known about perceptions of transplant success among individuals with UE amputations.…”

Section: Introductionmentioning

confidence: 99%

Patient definitions of transplant success in upper extremity vascularized composite allotransplantation: A mixed-methods study

et al. 2023

View full text Add to dashboard Cite

Objective: Upper extremity vascularized composite allotransplantation is an innovative treatment option for people with upper extremity amputations. Limited patient-relevant long-term outcomes data about transplant success may impede patients’ informed treatment decision-making. We assessed perceptions of what constitutes upper extremity vascularized composite allotransplantation success among individuals with upper extremity amputations. Methods: This multisite study entailed interviews and focus groups with individuals with upper extremity amputations and upper extremity vascularized composite allotransplantation candidates, participants, and recipients. We examined perceptions of transplant success and preferences for five upper extremity vascularized composite allotransplantation outcomes. Qualitative data were analyzed using thematic analysis; and quantitative data were analyzed using descriptive statistics. Results: In all, 50 individuals participated in interviews (61.7% participation rate), and 37 participated in nine focus groups (75.5% participation rate). Most were White (72%, 73%), had a mean age of 45 and 48 years, and had a unilateral amputation (84%, 59%), respectively. Participants conceptualized upper extremity vascularized composite allotransplantation success as transplant outcomes: (1) restoring function and sensation to enable new activities; (2) accepting the transplanted limb into one’s identity and appearance; (3) not having transplant rejection; (4) attaining greater quality of life compared to prosthetics; and (5) ensuring benefits outweigh risks. Participants rated their most important upper extremity vascularized composite allotransplantation outcomes as follows: not having transplant rejection, not developing health complications, grasping objects, feeling touch and temperature, and accepting the upper extremity vascularized composite allotransplantation into your identity. Conclusion: Individuals with upper extremity amputations maintain several conceptions of vascularized composite allotransplantation success, spanning functional, psychosocial, clinical, and quality of life outcomes. Providers should address patients’ conceptions of success to improve informed consent discussions and outcomes reporting for upper extremity vascularized composite allotransplantation.

show abstract

Perceptions of the Risks and Benefits of Upper Limb Transplantation among Individuals with Upper Limb Amputations

Cited by 8 publications

References 8 publications

Ethical and Psychosocial Factors in the Decision-Making and Informed Consent Process for Upper Extremity Vascularized Composite Allotransplantation: A Mixed-Methods Study

Ethical and Psychosocial Factors in the Decision-Making and Informed Consent Process for Upper Extremity Vascularized Composite Allotransplantation: A Mixed-Methods Study

Psychosocial and bioethical challenges and developments for the future of vascularized composite allotransplantation: A scoping review and viewpoint of recent developments and clinical experiences in the field of vascularized composite allotransplantation

Patient definitions of transplant success in upper extremity vascularized composite allotransplantation: A mixed-methods study

Contact Info

Product

Resources

About