Abstract
Background: Almost 100 hand and face transplants have been performed worldwide. Their success has generated enthusiasm within the medical community, however, little is known about public attitudes toward vascularized composite allotransplantation (VCA) of the hands and face as compared to solid organ transplantation. The objective of this survey study was to assess these attitudes and the acceptability and potential barriers to the further growth of these procedures.
Methods: Cooper University Hospital Emergency Department (Camden, New Jersey) patients, accompanying family members and friends ≥18 years of age were surveyed about knowledge of and attitudes toward organ, hand, and face transplants as well as preferences as a potential VCA donor or recipient. The socioeconomic aspects of VCA also were assessed.
Results: A total of 1,027 individuals participated. Approximately 70% (69.7%) of respondents indicated that they would want to be organ donors, although only 37.1% reported donor registrations on their driver's license. Respondents demonstrated greatest willingness to donate solid organs upon death: kidneys (77.5%), liver (77.1%), and heart (76.4%). Willingness to donate was less for hands (54.6%) and face (44.0%). Similarly, respondents were more willing to receive a kidney (85.2%) than a hand (60.0%) or face (49.4%).
Conclusions: Respondents were more willing to be donors or recipients of solid organs than of hands or face. However, substantial percentages of individuals indicated a willingness to donate or receive hands or a face. As VCA continues to evolve, knowledge of public attitudes toward VCA will be critical for organ procurement organizations, health system engagement, and funding for relevant research.
Introduction
Vascularized composite allotransplantation (VCA) is the term currently used to describe the transplantation of heterogenous tissues, such as a human hand, which contains bone, muscle, vessels, nerves, and skin.Citation1 It is now possible to transplant the human hand, leg, uterus, abdominal wall, and face from a deceased donor to a patient in need. To date, more than 65 hand transplantsCitation1 and 27 face transplantsCitation2 have been performed worldwide. The primary reason for such transplants is devastating trauma or infection that compromises the patient's ability to perform activities of daily living. In cases of facial disfigurement, VCA can greatly mitigate an individual's ability to interact with others without social stigma often experienced by those with severe facial disfigurement. The number of hand and face transplant procedures is expected to rise in the coming years as further advances are made in the surgical treatment of these patients and build upon the encouraging early results.
Over the past decade, a body of literature has been dedicated to the psychological and ethical issues involved in VCA.Citation3-10 Despite this rich and ongoing academic discussion, public attitudes toward face and hand transplants remain unknown.Citation11,12 While a number of studies have addressed perceptions of face transplant,Citation13-22 most have surveyed specific groups and focused on immunosuppressant therapy and rejection risk. To our knowledge, there has been no evaluation of public attitudes toward issues related to VCA. Attitudes toward financial responsibility and interpretation of publicity related to VCA are also unknown. This survey study was designed to explore how demographic factors and general understanding of the organ donation process relate to interest in and willingness to participate in organ donation.
Materials and Methods
Setting
Participants were recruited from the Cooper University Hospital Emergency Department (ED) located in Camden, New Jersey from October 2012 through April 2013. Camden is an inner city with a population of approximately 77,300 and an ethnicity/race distribution that is 47% Hispanic, and 44% black.Citation23 Camden is considered one of the poorest cities in the nation, with a median household income of $26,347 and 38% of the population living below the poverty level (2007–2011).Citation23 Camden also has the highest city crime ranking in the country.Citation24 These demographics lend themselves to a population that is familiar with traumatic injuries. Given that nearly 20% of the ED patient population is comprised of Camden residents, we anticipated a diverse study population.
Participants
An ED population was intentionally selected for this survey. The majority of ED patients present with an acute medical problem that needs immediate medical attention. This acuity, combined with the preponderance of traumatic injuries, makes this a suitable cohort for an investigation of VCA. Patients and family members in the ED are often willing to participate in longer surveys while waiting for results of ancillary testing and dispositions from the treating physician.Citation25,26 Patients and their accompanying family and friends were eligible for inclusion if they were over 18 y of age and able to read and understand English. All study procedures were approved by the University of Pennsylvania and Cooper University Hospital Institutional Review Boards. All participants provided verbal informed consent.
Survey design
The authors developed the survey for this study (Appendix A). Content validity was assessed by coauthors with expertise in solid organ transplantation, VCA, bioethics, psychological aspects of appearance and disfigurement, emergency department survey administration, and survey development for ease-of-understanding within a population with lower levels of educational attainment. The survey required approximately 15 minutes to complete and contained 31 questions in which participants were asked to rate their familiarity and comfort with the process of solid organ donation. Specifically, questions addressed attitudes toward becoming a donor and attitudes toward discussing organ donation with family members; willingness to donate particular body parts after death; understanding of the organ donation process; agreement or disagreement with statements about immunosuppressant therapy, financial responsibility, and identity concerns related to VCA; and willingness to be a public figure after face or hand transplantation.
Participants responded using visual analog scales (VAS) for various questions (e.g., 0 = strong no; 100 = strong yes). To simplify the analysis, each VAS was collapsed into 3 categories: “no” for responses scoring 0–30, “maybe” for 31–69, and “yes” for 70–100.
Demographic data also were collected, including age, gender, marital status, religious affiliation, level of education, race/ethnicity, employment status, income and whether or not they had undergone any cosmetic or transplant surgical procedures. No identifying information was collected.
Survey administration
Eligible patients were identified at the Cooper University Hospital ED by trained research associates who approached patients and their accompanying family and friends once the initial physician encounter was completed and patients were considered medically stable for participation. Enrollment was conducted 7 d a week, from 8:30 a.m. to 10:30 p.m., ensuring a representative ED sample. Once informed consent was obtained, the questionnaire was administered using a laptop computer, with questions read aloud for patients with vision limitations. Survey responses were entered into and managed by the secure, web-based Research Electronic Data Capture (REDCap) survey tool hosted at the University of Pennsylvania.Citation27
Statistical analysis
Summary statistics for all variables were examined to assess integrity of survey responses. Frequencies and proportions were reported for categorical variables. Means and standard deviations or medians and interquartile ranges were analyzed for continuous variables, as appropriate. For all analyses, an α (α) level of P <0.05 was considered statistically significant. Chi-squared or Fisher's exact tests were used to determine statistical differences in responses by age, gender, race (white / non-white), religion (Christian / non-Christian), employment status (unemployed / healthcare / non-healthcare), income (<$25,000 / ≥$25,000 per year), and education (<12th grade, 12th grade, >12th grade). Statistical tests were conducted using IBM SPSS Statistics (version 21.0, Armonk, NY).
Results
Cohort characteristics
One thousand twenty-seven individuals completed the survey over the 7-month study period. summarizes the demographic characteristics of the respondents. The majority were ED patients (88.5%) seeking treatment for an acute medical condition (68.7%). Respondents ranged in age from 18–90+ years, with the majority being between 18–29 y of age (28.1%). Most were female (62.2%), white (57.9%), and non-Hispanic (74.0%). A total of 127 (12.4%) participants had experience with organ transplant: 10.5% had a family member listed for recipient of an organ and 1.9% had themselves listed for recipient of an organ.
Table 1. Demographic characteristics of the study population (N = 1,027)
General knowledge of organ donation
As summarized in , the vast majority (93.0%) of respondents had heard of organ donation. Respondents were most familiar with solid organ transplants involving kidneys (97.6%), heart (96.2%), and liver (94.3%) and were less familiar with transplants of the hands (67.1%), ovaries (63.3%), face (57.2%), stomach (54.7%), and uterus (53.1%). Respondents were most familiar with biological or tissue type match as being a required step for organ donation.
Table 2. Knowledge of organ donation
Preferences and rationale for organ donation
summarizes respondent preferences and rationale for organ donation. Despite most respondents (69.7%) reporting that they would want to be an organ donor, only 52.8% of these individuals (37.1% in total) were listed as organ donors on their driver's licenses, and 42.0% (34.0% in total) reported ever having discussed organ donation with their families. The most common reason for wanting to be an organ donor was to save a life.
Table 3. Preferences and rationale for organ donation
Respondents were most willing to donate solid organs upon death, with the majority of respondents indicating “yes” (i.e., 70–100 on VAS ranging from 0–100) for kidneys (77.5%), liver (77.1%), and heart (76.4%). Fewer respondents indicated “yes” for uterus (60.0%, women only) and hands (54.6%). The fewest respondents indicated “yes” to willingness to donate their face (44.0%).
Most respondents (55.4%) indicated no reason for not wanting to donate an organ. Of those willing to donate a solid organ (i.e., heart, kidney, or liver) but not a face, the most common reasons were: wanting one's face to remain intact (13.8%), not wanting one's family to see one's face on another person (10.4%), and not wanting another person to look like oneself (9.0%).
Preferences for receiving an organ transplant
As shown in , respondents demonstrated greater willingness to receive a kidney (85.2%) than a hand (60.0%, P < 0.001) or face (49.4%, P < 0.001) transplant, as indicated by a “yes” (i.e., 70–100 on VAS ranging from 0–100). Of these, most were willing to accept a lifetime of immunosuppressant therapy for hand (80.7%) or face (81.3%).
Table 4. Preferences for receiving an organ transplant
Attitudes toward social aspects of VCA
shows respondents’ attitudes toward social aspects of VCA. While attitudes toward payment for solid organ transplants and face transplants did not differ in general, more respondents felt patients and their families should pay for face and hand transplants (13.4%) compared with solid organ transplants (4.6%) (P < 0.001). More respondents indicated they would desire to meet the recipient of a loved one's kidney transplant compared with a hand or face transplant. Of those who would wait longer for a hand or face transplant that matched their skin color, most were not sure how much longer.
Table 5. Attitudes toward social aspects of VCA
Presented with 3 potential face transplant recipients, respondents preferred a face transplant going to an injured soldier over a healthy person injured from an animal attack or a smoker burned from a house fire caused by a lit cigarette. This preference did not vary with respect to demographic variables (i.e., age, gender, race, religion, employment status, income, and education). Respondents were more willing to be interviewed on television after receiving a kidney transplant than a hand or face transplant. Most would prefer an open casket burial or cremation after donating an internal body part (62.8%). In contrast, cremation and closed casket burial were preferred after donating a visible body part (59.2%).
Discussion
VCA is a growing specialty throughout the world. Several academic medical centers both within and outside of the United States have already performed these procedures and others are preparing to offer them. To date, most VCA-related research has focused on technical aspects of the procedures and issues of immunosuppression, with some discussion of the psychosocial and bioethical issues.Citation3-10 Less is known about public perception and attitudes toward these procedures, which was the rationale for this study.
Perhaps not surprisingly, awareness of VCA is lower compared to that of solid organ transplants. This likely reflects the recent introduction of VCA relative to solid organ transplantation. Even with the extensive and ongoing media coverage of face and hand transplantation, awareness of these procedures is not as great as that of solid organ transplantation.
While a majority of those surveyed indicated a desire to posthumously donate their organs, only half of these individuals had registered as organ donors. Among those willing to donate organs or body parts, approximately one-third of respondents indicated that they would be willing to donate their face or hands. However, donation preferences tend strongly toward solid organs over the hands and face. The main reasons for reluctance to donate were desire for one's face to remain intact after death and aversion toward another person looking like oneself, which is perhaps representative of the central role of the face in self-identity.Citation28,29 Because face transplantation most often results in a hybrid appearance of the donor's facial features with the recipient's underlying bone structure,Citation30 addressing the latter concern may be important for successfully educating VCA donors and recipients as well as the general public.Citation31
Respondents were more willing to receive a donated organ than to donate their own organ, as found in other studies.Citation32,33 This dichotomy is true for kidney transplants as well as for transplants of the hands and face, which suggests that existing problems associated with the solid organ shortage may apply to VCA as it becomes more common. On average, people who would accept a hand or face transplant are almost as willing to accept the risk of lifelong immunosuppressant therapy for VCA as they are for a kidney transplant.
Attitudes toward the societal implications of VCA suggest that the study population views transplant of the hands or face as a partly medical and partly elective procedure. Many of those who would accept a hand or face transplant would prefer a body part that matches their skin tone, which suggests that cosmetics may be an important consideration for VCA. In addition, more survey respondents indicated that VCA costs should be paid out-of-pocket than by insurance or government programs as compared to solid organ transplant. This could represent a threat to the long term growth and sustainability of the specialty, as few individuals would be able to pay for the substantial medical costs presently associated with these procedures.
Perception of personal sacrifice and accountability for facial trauma plays a role in public endorsement of face transplant. Transplant to ameliorate injury sustained secondary to military service garners nearly universal support. Victims of disfiguring accidents receive substantial support as well, though transplantation is valued more highly for “blameless” accidents than for accidents partly resulting from the victim's own actions.
While our study provides new information on attitudes toward VCA, it has some limitations. Primarily, our sample, while large and diverse, can be seen as non-representative of the more general population. Future studies that include more geographical and socioeconomic representation, but that also use large sample sizes, may provide additional information on attitudes toward VCA or yield important confirmatory findings.
In conclusion, this study suggests that an urban emergency department population is more aware of and comfortable with solid organ transplantation than VCA. While organ transplantation is generally well-received, hand and face transplants are less understood and less accepted. The high willingness to donate organs despite the low rates of donor registration and family member discussion reported in this study could be improved by promoting discussion of organ donation among family members, as suggested by previous studies.Citation34-36 These observations may serve as potential targets for future public education campaigns that not only emphasize the need for organ donation registration but the specific consideration of VCA procedures as well. Finally, additional research is needed to further elucidate the psychosocial concerns, particularly in the areas of identity and body image, among donors and recipients of VCA.
Disclosure of Potential Conflicts of Interest
No potential conflicts of interest were disclosed.
975021_Supplementary_Materials.zip
Download Zip (51.6 KB)Acknowledgments
We thank Kristen L. Patterson, BS, of the Cooper University Hospital for administering the survey.
References
- American Society for Surgery of the Hand Council. ASSH position statement on hand transplantation 2013. J Hand Surg Am 2013; 38(11):2234-5; PMID:24206988; http://dx.doi.org/10.1016/j.jhsa.2013.08.119
- Siemionow M, Gharb BB, Rampazzo A. Success and lessons learned after more than a decade of upper extremity and face transplantation. Curr Opin Organ Transplant 2013; 18(6):633-9; PMID:24126806; http://dx.doi.org/10.1097/MOT.0000000000000021
- Agich GJ, Siemionow M. Until they have faces: the ethics of facial allograft transplantation. J Med Ethics 2005; 31:707-9; PMID:16319234; http://dx.doi.org/10.1136/jme.2005.011841
- Barker JH, Brown CS, Cunningham M, Wiggins O, Furr A, Maldonado C, Banis JC Jr. Ethical considerations in human facial tissue allotransplantation. Ann Plast Surg 2008; 60:103-9; PMID:18281806; http://dx.doi.org/10.1097/SAP.0b013e31804bdf42
- Brown CS, Gander B, Cunningham M, Furr A, Vasilic D, Wiggins O, Banis JC, Vossen M, Maldonado C, Perez-Abadia G, et al. Ethical considerations in face transplantation. Int J Surg 2007; 5:353-64; PMID:17933695; http://dx.doi.org/10.1016/j.ijsu.2006.06.019
- Siemionow M. Ethical considerations in face transplantation: ethical issues related to inclusion criteria for face transplant candidates. Arch Immunol Ther Exp 2011; 59:157-9; PMID:21442310; http://dx.doi.org/10.1007/s00005-011-0121-6
- Wiggins OP, Barker JH, Martinez S, Vossen M, Maldonado C, Grossi F, Francois C, Cunningham M, Perez-Abadia G, Kon M, et al. On the ethics of facial transplantation research. Am J Bioethics 2004; 4(3):33-5; PMID:16192123; http://dx.doi.org/10.1080/15265160490496507
- Coffman KL, Gordon C, Siemionow W. Psychological outcomes with face transplantation: overview and case report. Curr Opin Organ Transplant 2010; 15(2):236-40; PMID:20308897
- Soni CV, Barker JH, Pushpakumar SB, Furr LA, Cunningham M, Banis JC Jr, Frank J. Psychosocial considerations in facial transplantation. Burns 2010; 36(7):959-64; PMID:20378255; http://dx.doi.org/10.1016/j.burns.2010.01.012
- Clarke A, Butler PE. The psychological management of facial transplantation. Expert Rev Neurother 2009; 9(7):1087-100; PMID:19589056; http://dx.doi.org/10.1586/ern.09.42
- Kiwanuka H, Bueno EM, Diaz-Siso JR, Sisk GC, Lehmann LS, Pomahac B. Evolution of ethical debate on face transplantation. Plast Reconstr Surg 2013; 132(6):1558-68; PMID:24281583; http://dx.doi.org/10.1097/PRS.0b013e3182a97e2b
- Paradis C, Siemionow M, Papay F, Lohman R, Kodish E, Gordon C, Djohan R, Coffman K, Bernard S, Alam D. Ethical considerations in the first American face transplant. Plast Reconstr Surg 2010; 126:896-901; PMID:20811223; http://dx.doi.org/10.1097/PRS.0b013e3181e3b63d
- Barker JH, Furr A, Cunningham M, Grossi F, Vasilic D, Storey B, Wiggins O, Majzoub R, Vossen M, Brouha P, et al. Investigation of risk acceptance in facial transplantation. Plast Reconstr Surg 2006; 118(3):663-70; PMID:16932174; http://dx.doi.org/10.1097/01.prs.0000233202.98336.8c
- Brouha P, Naidu D, Cunningham M, Furr A, Majzoub R, Grossi FV, Francois CG, Maldonado C, Banis JC, Martinez S, et al. Risk acceptance in composite-tissue allotransplantation reconstructive procedures. Microsurgery 2006; 26(3):144-9; PMID:16518801; http://dx.doi.org/10.1002/micr.20227
- Coombes R. Face of the future. BMJ 2008; 336(7634):18-9; PMID:18174594; http://dx.doi.org/10.1136/bmj.39433.451424.AD
- Siebert C. “Making Faces.” New York: The New York Times, 9 Mar. 2003, Health sec.
- Mathes DW, Kumar N, Ploplys E. A survey of North American burn and plastic surgeons on their current attitudes toward facial transplantation. J Am Coll Surg 2009; 208:1051-8; PMID:19476891; http://dx.doi.org/10.1016/j.jamcollsurg.2009.01.051
- Pirnay P, Foo R, Herve C, Meningaud J-P. Ethical questions raised by the first allotransplantations of the face: a survey of French surgeons. J Cranio-Maxillo-Facial Surg 2012; 40:e402-7; PMID:22429610; http://dx.doi.org/10.1016/j.jcms.2012.02.013
- Ozmen S, Findikcioglu F, Sezgin B, Findikcioglu K, Kucuker I, Atabay K. Ann Plast Surg 2013; 71(2):233-7; PMID:23842465; http://dx.doi.org/10.1097/SAP.0b013e31826cadd2
- Agbenorku P, Agbenorku M, Agamah G. Awareness and attitudes toward face and organ transplant in Kumasi, Ghana. Ghana Med J 2013; 47(1):30-4; PMID:23661853
- Tan PW, Patel AS, Taub PJ, Lampert JA, Xipoleas G, Santiago GF, Silver L, Sheriff HO, Lin TS, Cooter R, et al. Cultural perspectives in facial allotransplantation. Eplasty 2012; 12:e39; PMID:22977674
- Prior J, Klein O. A qualitative analysis of attitudes to face transplants: contrasting views of the general public and medical professionals. Psychol Health 2011; 26(12):1589-1605; PMID:21678168; http://dx.doi.org/10.1080/08870446.2010.545888
- United States Census Bureau, 2010 Census: Camden City New Jersey. Available at US Census Bureau website: http:quickfacts.census.govqfdstates343410000.html. Accessed September 20, 2013
- CQ Press: City Crime 2012 - 2013. Available at http:www.cqpress.compagescc1213. Accessed September 21, 2013
- Cassidy-Smith TN, Baumann BM, Boudreaux ED. The disconfirmation paradigm: throughput times and emergency department patient satisfaction. J Emerg Med 2007; 32(1):7-13; PMID:17239726; http://dx.doi.org/10.1016/j.jemermed.2006.05.028
- Storrow AB, Zhou C, Gaddis G, Han JH, Miller K, Klubert D, Laidig A, Aronsky D. Decreasing lab turnaround time improves emergency department throughput and decreases emergency medical services diversion: a simulation model. Acad Emerg Med 2008; 15(11):1130-5; PMID:18638034; http://dx.doi.org/10.1111/j.1553-2712.2008.00181.x
- Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap) - a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42(2):377-81; PMID:18929686; http://dx.doi.org/10.1016/j.jbi.2008.08.010
- Morris PJ, Bradley JA, Doyal L, Earley M, Hagan P, Milling M, Rumsey N. Facial transplantation: a working party report from the Royal College of Surgeons of England. Transplantation 2004; 77(3):330-8; PMID:14966404; http://dx.doi.org/10.1097/01.TP.0000113810.54865.BE
- Freeman M, Jaoude PA. Justifying surgery's last taboo: the ethics of face transplant. J Med Ethics 2007; 33:76-81; PMID:17264192; http://dx.doi.org/10.1136/jme.2006.016865
- Renshaw A, Diver A, Clarke A, Butler PE. Facial transplantation: a real option in facial reconstruction? Int J Surg 2006; 4(2):94-6; PMID:17462322; http://dx.doi.org/10.1016/j.ijsu.2006.03.001
- Gwanmesia I, Clarke A, Butler PE. Facial transplantation revisited: findings from the very first public engagement exercise. Int J Surg 2011; 9(5):433-6; PMID:21545854; http://dx.doi.org/10.1016/j.ijsu.2011.04.005
- Hyde MK, White KM. A comparison of registered and unregistered organ donors’ perceptions about transplant recipients. Clin Transplant 2011; 24:444-9; http://dx.doi.org/10.1111/j.1399-0012.2010.01257.x
- Sanner MA. Giving and taking – to whom and from whom? People's attitudes toward transplantation of organs and tissues from different sources. Clin Transplant 1998; 12(6):530-7; PMID:9850446
- Murray L, Miller A, Dayoub C, Wakefield C, Homewood J. Communication and consent: discussion and organ donation decisions for self and family. Transplant Proc 2013; 45(1):10-2; PMID:23375269; http://dx.doi.org/10.1016/j.transproceed.2012.10.021
- Siminoff LA, Gordon N, Hewlett J, Arnold RM. Factors influencing families’ consent for donation of solid organ transplantation. JAMA 2001; 286(1):71-7; PMID:11434829; http://dx.doi.org/10.1001/jama.286.1.71
- Radecki CM, Jaccard J. Psychological aspects of organ donation: a critical review and synthesis of individual and next-of-kin donation decisions. Health Psychol 1997; 16(2):183-95; PMID:9269891; http://dx.doi.org/10.1037/0278-6133.16.2.183