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

Abstract

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.

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

“…53 Other study participants desired further information before deciding, 17 including about costs and insurance coverage, as documented elsewhere. 30 Consistent with previous research, a key finding was limited knowledge about UE VCA among individuals with UE amputations. 30 Transplant providers' shared decision-making process with potential UE VCA recipients should address the psychosocial factors pertaining to the pre-transplant course that our respondents identified to enhance the informed consent process.…”

“…30 Consistent with previous research, a key finding was limited knowledge about UE VCA among individuals with UE amputations. 30 Transplant providers' shared decision-making process with potential UE VCA recipients should address the psychosocial factors pertaining to the pre-transplant course that our respondents identified to enhance the informed consent process. Toward this end, transplant providers could structure their shared decision-making discussion according to the elements of informed consent.…”

“…Other research similarly identified concerns with rejection and subsequent amputation. 30 Another key theme pertained to psychosocial factors. Although those in favor of UE VCA were compelled by UE VCA's promise of improved appearance and increased family interaction, others were less enthusiastic after having adapted to limb loss, consistent with previous research.…”

“…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.…”

A Single-Center Retrospective Evaluation of Decision-Making and Factors Motivating Hand Transplant Candidates

“…7 Despite this improvement, individual patients have reported lack of meaningful functionality and decisional regret in choosing hand transplant, highlighting opportunities to better manage expectations prior to and adjustment following the procedure. 7,8 Much of what has been studied thus far in VCA populations, including those being considered for and/or receiving hand transplant, has documented patient journeys for those who may consider transplant 9 or ultimately complete transplant. 2,7,[10][11][12][13][14] Previous literature has documented treatment team dynamics 15 and clinical considerations pre-procedure and patient characteristics hypothesized to be crucial to success of the transplant.…”