Adjustment to amputation and interest in upper limb transplantation

Talbot, Simon G.; Carty, Matthew J.; Jensen, Sally E.; Dumanian, Gregory A.

doi:10.1177/2050312119858248

Cited by 7 publications

(10 citation statements)

References 20 publications

(23 reference statements)

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“…We found that some participants had not explored other treatment options, such as VCA, because of concerns about financial burden or lack of insurance coverage. Our findings are consistent with Talbot et al (2019) who found that adjustment to amputation (limb loss) was inversely related to an interest in transplantation and concluded this may help explain the difficulty in identifying and selecting candidates for VCA. One possible solution for addressing concerns about financial burden or insurance coverage is to have clearer communication early in the evaluation or treatment process about financial burdens and what insurance will and will not cover.…”

Section: Discussionsupporting

confidence: 92%

Education for patients with limb loss or absence: Aging, overuse concerns, and patient treatment knowledge gaps

et al. 2022

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The goals of vascular composite allotransplantation (VCA) for hand are to maximize functional status and psychosocial wellbeing and to improve quality of life. Candidates are carefully vetted by transplant programs through an extensive evaluation process to exclude those patients with contraindications and to select those that are most likely to attain functional or quality of life benefit from transplant. Patient choice for any treatment, however, requires that candidates be able to understand the risks, benefits, and alternatives before choosing to proceed. This study aimed to understand patients’ knowledge and perceptions about treatment options for hand loss, including hand transplant. This study will be used to inform a standardized education approach and develop conversation aids for use by clinicians and patients throughout the treatment decision process. Ten individuals who had experienced hand amputation or had congenital limb loss were interviewed to better understand previous and current decisions about treatment, experiences in adjusting to their treatment, and perceptions about hand VCA. From this qualitative interview data, four findings emerged: (1) knowledge and education around VCA as a treatment option; (2) adaptation of individuals with limb loss; (3) fear of risk associated with transplantation; (4) issues of aging and overuse injuries to existing limbs. Results suggests that there is opportunity for expanding education about all treatment options for patients with new loss, long-term loss, and congenital limb loss. Establishing a baseline of knowledge about all options–prosthetics, rehabilitative strategies, and VCA—can help patients evaluate their values and goals of treatment. Issues associated with aging, including overuse and injury, and adaptability over the life course should be included in considerations about treatment choices. Data indicate the need for routinely assessing patient preferences about treatment choice so patients can plan for their future as they adapt and age and as technology for treatments change. To assure that thorough information is provided for current and future decision-making, education about treatment choices and selection procedures for VCA should be standardized.

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Section: Discussionsupporting

confidence: 92%

Education for patients with limb loss or absence: Aging, overuse concerns, and patient treatment knowledge gaps

et al. 2022

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“…Talbot and colleagues found an inverse relationship between patients' interest in UE VCA and adjustment time since amputation. 31 Patients also reported identity concerns of transforming into "Frankenstein" 52 through VCA, as found elsewhere. 53 Other study participants desired further information before deciding, 17 including about costs and insurance coverage, as documented elsewhere.…”

Section: Discussionmentioning

confidence: 54%

“…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%

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

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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.

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“…Efforts are being made to study hand and upper extremity transplant recipients and caregivers outside of laboratory settings. 14 Herrington et al explored the narratives of caregivers who often felt burdened by demands of providing care, 15 despite their being crucial for long-term patient well-being and allograft survival. 16 Caregiving imposes physical and psychosocial demands on caregivers that affect their health and well-being sufficiently to impact the care they provide.…”

Section: Commentarymentioning

confidence: 99%

Should a Caregiver's QoL Be Considered in Decisions About Whether a Patient Has an Experimental Double-Hand Transplant?

Dorante¹,

Devine

Talbot

2019

AMA Journal of Ethics

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A goal of hand and upper extremity transplantation is to return motor and sensory function to an amputee. Given the integral roles of one's hands in activities of daily living and social interaction, however, restoring psychosocial well-being should also be a priority. Based on the authors' experience, double-hand transplantation success depends significantly on strong social support, physical rehabilitation, medication adherence, and social integration. Because caregiving is demanding, tasks should be distributed among members of a patient's family and social network. This article analyzes how to respond to an overwhelmed caregiver by drawing on solid organ transplant literature about caregiver fatigue. CaseC is a quadrilateral amputee who lives with her partner, N. After 2 years of working with prosthetics and outfitting their apartment with assistive devices, N and C have a life together they enjoy.

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Adjustment to amputation and interest in upper limb transplantation

Cited by 7 publications

References 20 publications

Education for patients with limb loss or absence: Aging, overuse concerns, and patient treatment knowledge gaps

Education for patients with limb loss or absence: Aging, overuse concerns, and patient treatment knowledge gaps

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

Should a Caregiver's QoL Be Considered in Decisions About Whether a Patient Has an Experimental Double-Hand Transplant?

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