Quality of Life after Face Transplantation: Outcomes, Assessment Tools, and Future Directions

Aycart, Mario A.; Kiwanuka, Harriet; Krezdorn, Nicco; Alhefzi, Muayyad; Bueno, Ericka M.; Pomahac, Bohdan; Oser, Megan

doi:10.1097/prs.0000000000002890

Cited by 45 publications

(25 citation statements)

References 54 publications

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“…Both qualitative and quantitative approaches can enrich our understanding of the daily realities of FT recipients, and previous studies have discussed the importance of a mixed methods approach in informing future PROMs. 25 This will enable the development of an instrument that reflects those domains of QoL that are specific to severe facial disfigurement and optimally address its multidimensional considerations as they relate to FT. 3 , 12 …”

Section: Discussionmentioning

confidence: 99%

“…Conventional qualitative content analysis is focused on providing a description of a phenomenon, in this case FT recipients’ perceptions of QoL following FT. 3 , 9 Content analysis originated as a quantitative approach to analyzing textual data in areas such as communication. 10 Subsequently, the method was adapted for use in qualitative analysis and for interpretation of interviews and textual data to develop novel understanding of complex concepts.…”

Section: Methodsmentioning

confidence: 99%

“…In a recent report, Aycart et al 3 identified over 25 different instruments that have been previously used to evaluate QoL after FT. The wide variety of available tools not only reflects the complexity and multidisciplinary nature of this procedure, but also implies that no one essential tool exists for comprehensive QoL assessment.…”

Section: Introductionmentioning

confidence: 99%

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Perceptions of Quality of Life among Face Transplant Recipients: A Qualitative Content Analysis

Greenfield

Kimberly²,

Berman

et al. 2020

Plastic and Reconstructive Surgery - Global Open

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Background: The aim of facial transplantation (FT) was to enhance quality of life (QoL) for individuals living with severe facial disfigurement. Yet QoL has proved challenging to assess, as the field lacks a unified approach for incorporating FT recipients’ perspectives into meaningful QoL measures. In this study, we review FT recipients’ self-reported QoL through a qualitative analysis of publicly available posttransplant interviews to identify the aspects of QoL they report as meaningful. Methods: A conventional qualitative content analysis was conducted through a comprehensive review of publicly available interviews with FT recipients. Data sources included English language audio, video, and online print interviews from 2008 to 2019. Recipient interview data were obtained for both partial and full FT recipients located in North America through Google and YouTube searches. Audio and video interviews were transcribed, and an inductive content analysis was used to develop and apply a coding scheme to all interview transcripts. Codes were subsequently grouped into categories and interpreted into themes. Results: In total, 81 interviews representing 12 North American, English-speaking face transplant recipients were collected from internet sources, of which 74 interviews remained after exclusion criteria were applied. Three themes emerged representing the dimensions of QoL emphasized by FT recipients: (1) reconstitution and re-embodiment of physical/corporeal selfhood, (2) integrity of cognitive/emotional selfhood, and (3) social selfhood and the importance of social integration. Conclusions: This study provides an insight into North American FT recipients’ experiences, values, and goals and illuminates critical aspects of QoL that are meaningful to this unique patient population, which may not be fully captured by currently available assessment tools. The themes developed in this study link facets of QoL to the overall significance of embodied selfhood among FT recipients and will help inform the future development of FT-specific patient-reported QoL outcome measures.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Perceptions of Quality of Life among Face Transplant Recipients: A Qualitative Content Analysis

Greenfield

Kimberly²,

Berman

et al. 2020

Plastic and Reconstructive Surgery - Global Open

View full text Add to dashboard Cite

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“… 105 – 107 Preoperative management of chronic pain is warranted in FT, considering the incidence of alcohol or other substance use disorders, or long-term opioid use seen in this patient population. 61 , 62 , 108 , 109 The pain thermometer and visual analog scale are assessment tools with reported use in FT. 62 , 86 , 110 Quality of life surveys such as the 36-Short Form Health Survey and EuroQol-5D (EQ-5D) also incorporate pain assessments. 88 , 89 , 101 , 110 – 113 Postoperative facial nerve pain control has included oxycodone and gabapentin, or the combination of oxycodone with methadone in a patient with a history of intravenous drug use.…”

Section: Discussionmentioning

confidence: 99%

“… 61 , 62 , 108 , 109 The pain thermometer and visual analog scale are assessment tools with reported use in FT. 62 , 86 , 110 Quality of life surveys such as the 36-Short Form Health Survey and EuroQol-5D (EQ-5D) also incorporate pain assessments. 88 , 89 , 101 , 110 – 113 Postoperative facial nerve pain control has included oxycodone and gabapentin, or the combination of oxycodone with methadone in a patient with a history of intravenous drug use. 32 , 62 The extent of recovery and long hospital stay have contributed to postoperative opioid dependence and reduced quality of life.…”

Section: Discussionmentioning

confidence: 99%

Anesthetic Considerations in Facial Transplantation: Experience at NYU Langone Health and Systematic Review

Alfonso

Ramly

Kantar

et al. 2020

Plastic and Reconstructive Surgery - Global Open

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Background: Anesthetic considerations are integral to the success of facial transplantation (FT), yet limited evidence exists to guide quality improvement. This study presents an institutional anesthesia protocol, defines reported anesthetic considerations, and provides a comprehensive update to inform future directions of the field. Methods: An institutional “FT Anesthesia Protocol” was developed and applied to 2 face transplants. A systematic review of 3 databases captured FTs in the peer-reviewed literature up to February 2020. Two reviewers independently screened titles and abstracts to include all clinical articles with FT recipient and/or donor-specific preoperative, intraoperative, and relevant postoperative anesthetic variables. Data charting guided a narrative synthesis, and quantitative synthesis reported variables as median (range). Results: Our institutional experience emphasizes the importance of on-site rehearsals, anticipation of patient-specific anesthetic and resuscitative requirements, and long-term pain management. Systematic search identified 1092 unique records, and 129 met inclusion criteria. Reports of 37 FTs in the literature informed the following anesthetic axes: donor pre- and intraoperative management during facial allograft procurement, recipient perioperative care, immunotherapy, antimicrobial prophylaxis, and pain management. Quantitative synthesis of 30 articles showed a median operative time of 18 hours (range, 9–28) and fluid replacement with 13 L (5–18) of crystalloids, 13 units (0–66) of packed red blood cells, 10 units (0–63) of fresh frozen plasma, and 1 unit (0–9) of platelets. Conclusions: Anesthetic considerations in FT span the continuum of care. Future efforts should guide standard reporting to establish evidence-based strategies that promote quality improvement and patient safety.

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How to Integrate Lived Experience Into Quality-of-Life Assessment in Patients Considering Facial Transplantation

Kimberly¹,

Alfonso

Ramly

et al. 2019

AMA Journal of Ethics

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DDSTo claim one AMA PRA Category 1 Credit TM for the CME activity associated with this article, you must do the following: (1) read this article in its entirety, (2) answer at least 80 percent of the quiz questions correctly, and (3) complete an evaluation. The quiz, evaluation, and form for claiming AMA PRA Category 1 Credit TM are available through the AMA Ed Hub TM . AbstractFacial transplantation has gained increasing acceptance as a treatment option to improve quality of life (QoL) for persons suffering from severe facial disfigurement. Despite its growth, the field has yet to establish a consistent approach to assessing QoL in face transplant candidates and recipients that includes integration of meaningful patient-reported outcomes. The published literature suggests that face transplant programs currently use a wide variety of assessment tools and strategies. Moreover, confusion remains as to how best to weigh patients' lived experiences and incorporate them into QoL assessments. Qualitative research can illuminate the dimensions of QoL that are meaningful to face transplant candidates and recipients. Coupled with collaboration and data sharing across face transplant programs, qualitative research will help to bring conceptual clarity and transparency to the assessment process. BackgroundPersons living with severe facial disfigurement, whether congenital or acquired, suffer not only from debilitating functional limitations-including difficulty speaking and swallowing-but also from intense social stigma related to their visible difference. Social stigma in the form of ostracism frequently leads to extreme social isolation and is associated with adverse mental health outcomes, including depression, anxiety, posttraumatic stress, and suicidal thoughts or actions. 1 Facial transplantation (FT) as a means of improving quality of life (QoL) can enable recipients to re-engage socially, restoring their social identities as active, integrated members of their communities. Bramstedt has even argued that severe facial disfigurement could be akin to a form of social death and thus that FT can be considered lifesaving. 2 allotransplantation.

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Quality of Life after Face Transplantation: Outcomes, Assessment Tools, and Future Directions

Cited by 45 publications

References 54 publications

Perceptions of Quality of Life among Face Transplant Recipients: A Qualitative Content Analysis

Perceptions of Quality of Life among Face Transplant Recipients: A Qualitative Content Analysis

Anesthetic Considerations in Facial Transplantation: Experience at NYU Langone Health and Systematic Review

How to Integrate Lived Experience Into Quality-of-Life Assessment in Patients Considering Facial Transplantation

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