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

Abstract

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.

“Facial Expression After Face Transplant: The First International Face Transplant Cohort Comparison”

“…However, the FDI might not be sensitive enough to measure all aspects of FT-related QoL, such as side effects of immunosuppression. The innate heterogeneity of FT procedures and patients precludes standardized development of patient-reported outcome metrics specific for patients with FT, 6,38,55 leading to a myriad of tools currently implemented to assess QoL after FT. 6,56 The Helsinki FT team has used head and neck cancer-oriented measures for assessment, 57,58 finding satisfactory improvements in aesthetic, sensory, Volume 152, Number 2 • Facial Expression after Face Transplant 323e and psychosocial functions alongside subjective improvement in QoL. 59,60 Both HFT patients have had good facial motor and lip function recovery, yet speech articulation, intelligibility, and acceptability has not recovered to preoperative levels.…”

Facial Transplantation: Principles and Evolving Concepts

“…9 Face transplant teams must also thoroughly assess a candidate's social support system to ensure favorable conditions for the lengthy postoperative recovery, adaptation to psychological repercussions, and adherence to lifelong immunosuppression that accompany the procedure. 2,10 Psychosocial factors are particularly important in candidates who have sustained self-inflicted injuries and have a history of substance abuse or suicidality. Facial transplantation has been reported to be successful in these patients, but resolution of suicidal tendencies and substance abuse must be ensured before performing the procedure.…”

“…57 Psychosocial outcomes following facial transplantation are encouraging, despite early concerns that the procedure may compromise the recipient's sense of identity. 2,10,48,56,57,[77][78][79] Patients receiving facial allografts have demonstrated improved quality of life, sense of self, social integration, and decreased prevalence of depression, with several patients returning to work following the procedure. 2,10,48,57 Satisfactory psychosocial outcomes are heavily dependent on appropriate patient selection and screening before transplantation.…”

Trends, Gaps, and Collaboration in Facial Transplantation: A Bibliometric Study

“…1 This life-altering procedure, first pioneered in 2005 in Paris with a partial FT, is reserved for severe facial injuries not amenable to conventional reconstructive procedures. 2,3 The rapid growth in clinical experience and interest in FT has resulted in substantial growth in publications. However, the pace of clinical FT developments has exceeded that of the published literature.…”

“… 1 This life-altering procedure, first pioneered in 2005 in Paris with a partial FT, is reserved for severe facial injuries not amenable to conventional reconstructive procedures. 2 , 3 …”