Identifying Health-Related Quality of Life Domains After Upper Extremity Transplantation

Tulsky, David S.; Kisala, Pamela A.; Tyner, Callie E.; Slotkin, Jerry; Kaufman, Christina L.; Dearth, Christopher L.; Horan, Annamarie D.; Talbot, Simon G.; Shores, Jaimie T.; Azari, Kodi; Cetrulo, Curtis L.; Brandacher, Gerald; Cooney, Carisa M.; Victorson, David; Dooley, Mary Anne; Levin, L. Scott; Tintle, Cdr Scott M

doi:10.1016/j.apmr.2023.01.001

Cited by 2 publications

(5 citation statements)

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“…Many of the factors important to understanding the physical and psychosocial HRQOL outcomes of UE transplant are shared with other rehabilitation populations, such as fine motor functioning and ability to conduct self-care activities, pain interference, and emotional difficulties, such as depression, anxiety, and psychological trauma ( Cella et al, 2012 ; Gershon et al, 2012 ; Kisala et al, 2015a , c ; Tulsky et al, 2015a ). Additionally, several unique areas relevant to HRQOL after UE transplantation were identified in our recent qualitative work with stakeholders ( Tulsky et al, 2023 ).…”

Section: Discussionmentioning

confidence: 99%

“…Stakeholder feedback was collected from UE transplant experts and clinicians (i.e., surgeons, nurses, mental health professionals, and physical and occupational therapists) through a series of focus groups, and from patients who have received UE transplant via individual telephone interviews. The full methodology and findings have been reported in a separate manuscript ( Tulsky et al, 2023 ) but will be described here briefly.…”

Section: Methodsmentioning

confidence: 99%

“…New HRQOL content domains important to UE transplant recipients were identified in response to the qualitative input from stakeholders ( Tulsky et al, 2023 ). The content coverage of each domain was designed to be directly responsive to the comments from stakeholders.…”

Section: Methodsmentioning

confidence: 99%

“…The initial steps in this PRO development process are to obtain substantive stakeholder feedback to guide development of such a system and to review existing measures for content (Bjorner and Ware, 1998;Bjorner et al, 2007;De Walt et al, 2007;Kisala and Tulsky, 2010;PROMIS, 2013). Thus far, our team has documented the domains of QOL impacted by UE transplant by soliciting stakeholder input (Tulsky et al, 2023) using a grounded theory-based qualitative approach (Glaser and Strauss, 1967;Strauss and Corbin, 1998;Kisala and Tulsky, 2010). The findings from this work are described briefly below.…”

Section: Introductionmentioning

confidence: 99%

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Assessment of quality of life after upper extremity transplantation: Framework for patient-reported outcome scale domains

et al. 2023

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Upper extremity transplantation offers the promise of restored function and regained quality of life (QOL) for individuals who have sustained hand or arm amputation. However, a major challenge for this procedure becoming an accessible treatment option for patients is the lack of standard measures to document benefits to QOL. Patient-reported outcomes (PRO) measures are well-suited for this kind of intervention, where the perspective of the patient is central to defining treatment success. To date, qualitative work with experts, clinicians, and patients has been used to identify the most important domains of QOL for PRO item development. Specifically, our group’s qualitative work has identified several domains of QOL that are unique to individuals who have received upper extremity transplants, which are distinct from topics covered by existing PRO measures. These include emotional and social aspects of upper extremity transplant, such as Expectations and Perceived Outcomes, Integration and Assimilation of Transplant, Fitting in, and Post-Surgical Challenges and Complications. The broad topic of Satisfaction with Transplant was subdivided into three subtopics: Function, Sensation, and Aesthetics. Satisfaction with Sensation was also identified as a unique domain not evaluated by existing PRO measures. This report operationalizes these eight QOL domains by presenting scoping definitions. This manuscript describes the work that has been completed for domain characterization as an early step toward developing standardized PRO measures to evaluate these important outcomes specific to upper extremity transplantation.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Assessment of quality of life after upper extremity transplantation: Framework for patient-reported outcome scale domains

et al. 2023

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“…Standardized outcome measurement instruments for VCA have not been developed and as yet we do not have quality of life research using validated scales comparing the outcomes of prosthetic use and upper extremity VCA ( 8 , 9 ). In addition, in some instances, VCA recipients have been unable to sustain the complex medical regimens, threatening graft survival ( 10 ).…”

Section: Introductionmentioning

confidence: 99%

The role of the purposeful shared decision making model in vascularized composite allotransplantation

Hargraves,

Boehmer,

Amer

et al. 2024

Front. Transplant.

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For some patients who have lost the lower part of an arm, hand transplant offers the possibility of receiving a new limb with varying degrees of sensation and function. This procedure, Vascularized Composite Allotransplantation (VCA), is demanding for patients and their care community and comes with significant risks. As a high-stakes decision, patients interested in VCA are subject to extensive clinical evaluation and eligibility decision making. Patients and their care community must also decide if hand transplant (versus other approaches including rehabilitative therapies with or without prosthesis) is right for them. This decision making is often confusing and practically and emotionally fraught. It is complicated in four ways: by the numerous beneficial and harmful potential effects of hand transplant or other options, the number of people affected by VCA and the diverse or conflicting positions that they may hold, the practical demands and limitations of the patient's life situation, and the existential significance of limb loss and transplant for the patient's being. Patients need support in working through these treatment determining issues. Evaluation does not provide this support. Shared decision making (SDM) is a method of care that helps patients think, talk, and feel their way through to the right course of action for them. However, traditional models of SDM that focus on weighing possible beneficial and harmful effects of treatments are ill-equipped to tackle the heterogeneous issues of VCA. A recent model, Purposeful SDM extends the range of troubling issues that SDM can help support beyond opposing effects, to include conflicting positions, life situations, and existential being. In this paper we explore the pertinence of these issues in VCA, methods of SDM that each require of clinicians, the benefits of supporting patients with the breadth of issues in their unique problematic situations, implications for outcomes and practice, and extend the theory of the Purposeful SDM model itself based on the issues present in hand transplant decision making.

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Identifying Health-Related Quality of Life Domains After Upper Extremity Transplantation

Cited by 2 publications

References 67 publications

Assessment of quality of life after upper extremity transplantation: Framework for patient-reported outcome scale domains

Assessment of quality of life after upper extremity transplantation: Framework for patient-reported outcome scale domains

The role of the purposeful shared decision making model in vascularized composite allotransplantation

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