Donor Registration and Willingness to Donate: Responses
Among the control group, 49 percent of participants were registered organ donors at the time of the study (Fig. 1, left). However, 78 percent responded that they were willing to donate their solid organs to save the life of a transplant candidate on a waiting list. Sixty-two percent had prior knowledge of facial transplantation before responding to the survey. Fifty-two percent of respondents reported a willingness to donate their face to someone with severe facial disfigurement; 29 percent were unsure, and 19 percent were not willing. Similarly, among the video group, 52 percent of participants were registered organ donors at the time of survey response, and 69 percent were willing to donate their solid organs for life-saving transplants (Fig. 1, right). Sixty-three percent reported knowledge of facial transplantation before recruitment for the study. Before the educational intervention, 51 percent reported willingness to donate their face for facial transplantation, 39 percent were unsure, and 10 percent were unwilling. After exposure to information about facial transplantation, 69 percent of respondents were willing to donate their face (an 18 percent increase). Among the 98 respondents who were unwilling or unsure of their intention to donate facial allografts before the educational intervention, a 35.7 percent shift was observed toward “willing to donate.” This shift signaled a 65 percent (13 of 20) decrease in respondents unwilling to donate and a 28 percent decrease in respondents unsure of their intention to donate.
Young adult to middle-aged participants (age 18 to 35 years) displayed more positive responses to the educational component of the study. Exposure to the educational video resulted in a 19 percent and a 23 percent increase in willingness to donate facial allografts among the 18- to 25- and 26- to 35-year-old age groups, respectively (Table 3). Interestingly, the gap between donor registration status and willingness to donate facial allografts after educational exposure was most apparent in younger participants, with a 24 percent and 15 percent discrepancy for both 18- to 25- and 26- to 35-year-old age groups, respectively.
Donor registration status was fairly even between genders, and both male and female respondents were equally aware of facial transplantation before the study (Table 2). Although women reported a higher interest in participating in solid organ donation, the groups were equally interested in donating facial tissue before watching the educational video. After the educational exposure, however, female respondents’ willingness increased by 22 percent, whereas male respondents increased by only 14 percent. Jewish respondents reported the highest rate of donor registration (62 percent). Eighty percent of Hindu respondents reported interest in solid organ donation despite a 0 percent rate of donor registration status (Table 3). Christian/Catholics and agnostics were most willing to donate facial tissue before and after education on facial transplantation. Jewish respondents were most aware of facial transplantation, and the video had the least influence in increasing this religious group’s interest in participating in facial transplantation donation.
Throughout the various racial/ethnic groups, Caucasians and Asian/Pacific Islanders were among the most willing to donate both solid organs and facial allografts before educational exposure (Table 3). Despite being among the lowest number of respondents registered to donate at the time of the study, black/African American respondents were strongly impacted by the educational video, which encouraged an additional 25 percent of respondents (who were previously unsure or unwilling) to state interest in participating in facial transplantation donation.
Responses were varied depending on levels of education. A higher percentage of individuals who graduated college and/or obtained a higher degree were registered to donate and were willing to donate both solid organs and facial tissue (Table 3). Individuals with a doctoral degree reported the highest increase in willingness to donate their face (25 percent), followed by individuals who hold a bachelor’s degree (23 percent) and individuals who had some college education (22 percent).
The sample size studied provided sufficient power for formal statistical analysis. Overall, analyses indicated a moderate to strong main effect of the video on increasing willingness to donate facial allografts across demographic characteristics. A 2 (gender) × 2 (time point: before versus after video) mixed design analysis of variance performed on willingness to donate face organs revealed a main effect of the video on significantly increasing the willingness of participants to donate (F 1,198 = 42.71, p < 0.000, partial η2 = 0.18). There was no main effect of gender, nor was there a significant gender × time point interaction; p > 0.05 for all. Therefore, gender appeared to have no influence on willingness to donate in the experimental group.
The analysis of variance performed on willingness to donate facial organs based on religion demonstrated, again, a significant main effect of the video (F 1,194 = 31.16, p < 0.000, partial η2 = 0.14). A weak but significant main effect of religion was also found (F 5,194 = 2.49, p < 0.05, partial η2 = 0.06). The weak effect size may be attributable to the small sample size in some of the religious groups. Nevertheless, post hoc multiple (least significant difference) comparisons were performed on religion, and Buddhists differed from both Christian/Catholic and nontheist groups significantly (p < 0.05 for all), but all other religious group comparisons were nonsignificant (p > 0.05 for all). The religion × time point interaction was not significant, suggesting that although differences in willingness to donate differed across religions, there was not a differential susceptibility among the religious groups to the effects of the video.
The 5 (ethnicity: Asian/Pacific Islander, black/African American, white/Caucasian, Hispanic/Latino) × 2 (time point: before versus after video) analysis of variance again revealed a significant main effect of the video (F 1,194 = 42.71, p < 0.000, partial η2 = 0.08). No statistically significant differences were observed because of ethnicity, nor was there a significant interaction between ethnicity and the effects of the video (p > 0.05 for all).
The effects of the video were consistent across all parametric factorial analyses; regardless of group categorical classifications (gender, religion, or ethnicity) the effects of the video were significant (p < 0.000 for all). The power of the video to provoke changes varied across analyses; partial η2 values ranged from 0.18 to 0.08. Thus, to obtain a deeper understanding of the singular effect of the video, a paired t test was performed before versus after video exposure in the absence of any categorical variable [t(199) = 6.50, p < 0.000]. The effect size for this analyses (partial η2 = 0.18) shows that across the range of demographic characteristics, the video produced a moderate to strong effect on willingness to donate.
We present preliminary, survey-based results that demonstrate the value of an educational intervention for increasing individuals’ consideration of donation for facial transplantation. The universal organ donor shortage remains a major limitation to widespread transplantation, and considerable efforts have been directed toward the design of intricate algorithms for organ allocation from a restricted donor pool. However, increasing the supply of organs available for donation each year may prove a more definitive solution. Moreover, as only a fraction of organ donors agree to donate vascularized composite tissue allografts, increased donor registration is a prerequisite for progress in the relatively new field of vascularized composite tissue allografting.
Several studies demonstrate that education is a promising route to public donation willingness and intention to donate,13 , 15 , 16 and some suggest the capacity for education to influence actual registration and the availability of solid organs.14 , 17 However, vascularized composite tissue allograft donation faces the additional hurdle of public skepticism. Hand, face, and other vascularized composite tissue allograft transplants are newer, less well understood by the public, and may elicit a different emotional reaction than solid organ transplants because of their strong association with personal identity.18 , 19 Facial transplantation reports in the media certainly have some effect on public attitudes,20 and framing of organ donation (be it positive or negative) in entertainment television has been found to be influential.21 In addition, the role of religion regarding opinions on vascularized composite tissue allograft is unclear; some studies found an association between religious beliefs and willingness to donate, whereas others have not.7 This study hints at some differences among religious groups; however, a larger cohort study is needed to determine a strong association.
These results show that even a brief educational experience increased individuals’ reported willingness to donate their face for transplantation, with statistical significance, in 18 percent of participants. Interestingly, younger respondents (18 to 35 years) and older respondents (>56 years) demonstrated a stronger response to the educational intervention compared with middle-aged participants, highlighting a generational gap and indicating important target populations for potential facial transplantation educational initiatives. Notably, younger donors are preferred as facial donors to achieve optimal functional and aesthetic results in facial transplantation.22 Similarly, older individuals’ perceptions of donation are important as, currently, donor families’ consent is sought for facial donation. Further study could help to elucidate age-related differences in the impact of educational interventions. With respect to gender, women’s desire to donate their face appeared more likely to be influenced by this short educational component; however, gender-based differences did not reach statistical significance. This suggests that although women may be more reluctant to participate in facial transplantation donation initially compared with solid-organ donation, increased exposure may lead them to agree more strongly with the value of facial donation for the purpose of treating severe disfigurement. Also of importance, we observed a greater change in donation considerations among ethnic groups (blacks/African Americans, Hispanic/Latinos) who are reported to have lower donor registration rates compared with whites/Caucasians. However, statistical analysis did not reveal differences associated with ethnicity. We also observed a trend between higher level of education and increased willingness to donate the face, which was expected.
As enlightening as these observed increases in willingness to donate may be, these results underscore previously reported significant discrepancies between individuals’ willingness to donate and actual commitment to donate as expressed through donor registration rates.8 , 15 Despite 78 percent of control group respondents and 69 percent of video group respondents indicating that they would consider donating their organs, only 50 percent and 52 percent from each group, respectively, reported being registered donors. To some extent, this issue may be attributed to the inopportune nature of donor registration requests. In settings such as the Department of Motor Vehicles, individuals have little opportunity to learn about organ donation, or to ask questions that might help convert their intent to donate into a decision to register. The willing-versus-registered gap might also be attributable, in part, to a lack of awareness regarding the possibility of other means of registration, for instance, registering by means of an online registry. The issues of inconvenience and lack of awareness can be overcome by directing unregistered individuals to online registries14 which, as of 2014, are responsible for 46 percent of recovered organ donor authorization.23 Other forms of social media outreach have demonstrated potential for increasing donor registration rates.24
However, simply providing the opportunity to register may not increase willingness to donate vascularized composite tissue allograft. In fact, it is possible that alerting potential donors to the existence of vascularized composite tissue allograft donation without providing additional information could decrease interest in solid organ donation because of mistaken fear that the latter requires the former. However, this study strongly supports adequate and accurate spread of information to increase awareness that will likely result in increased donation rates. Providing uniquely positioned figures such as Department of Motor Vehicles clerks and medical students or other health care providers with this education might improve dissemination of vascularized composite tissue allograft facts.16 , 17 An educational component combined with the opportunity to register quickly and easily by means of an online state registry can be implemented in public locations and in classrooms so that newly informed people can bring their registration intentions to fruition.
As a small-scale pilot, this study has two primary limitations. First, the sample size is drawn from an urban population that does not reflect demographic distributions in the general population. Although efforts were made to ensure that the population sampled was as representative as possible, the respondents reached higher levels of education than might be found among the general population. Larger scale studies are needed to generalize the results to the U.S. population with respect to overall demographics, donor registration status, awareness of organ donation, and willingness to donate. In addition, larger studies can delve into broader concepts including opinions on donating a family member’s facial tissue. Second, conclusions cannot be drawn regarding respondents’ actual commitment to change their donor registration status and/or consent to facial allograft or even solid organ donation. However, what can be concluded from this study is that even the briefest educational intervention can strongly encourage the general public to become more amenable to the concept of facial allograft donation and the positive impact it can have on a potential recipient. Furthermore, based on these preliminary results, we hypothesize that more substantial and directed educational efforts at a regional or national level may have a similarly positive impact on the general population’s intent and, ultimately, commitment to donate facial allografts.
It is crucial that educational interventions provide balanced and objective information indicating the extent of vascularized composite tissue allograft experience (whether procedures are considered experimental or standard of care) and specifying potential risks in addition to benefits, so that individuals are empowered to make informed decisions that align with their own beliefs and values.25 As long as the United States retains an “opt-in” donation system, there is an ethical obligation to ensure that individuals not be unfairly influenced into registering because of misinformation or lack of information. Furthermore, if a registered party discover that their decision to register was based on biased information, the resulting breach of trust would likely have negative consequences for future registration.
Dr. David B. Sarwer is Associate Dean for Research, Professor of Social and Behavioral Sciences, and Director of the Center for Obesity Research and Education, College of Public Health, Temple University, Philadelphia, Pa. Dr. Laura A. Siminoff is Dean and Laura H. Carnell Professor of Public Health, Department of Social and Behavioral Sciences, Temple University, Philadelphia, Pa.
The last several decades have witnessed significant advances in trauma care that have allowed countless individuals to survive devastating injuries to the head and face. Many of these individuals subsequently undergo reconstructive procedures performed by plastic surgeons. The goal of these procedures is to improve functioning to enable proper intake of nutrition and improve verbal communication. A secondary goal for many procedures is to enhance facial appearance to an approximation of normality. Unfortunately, patients who suffer significant facial trauma are often left with substantial, residual disfigurement, which, independent of functional impairment, is associated with a significant psychosocial burden. This burden is often worsened by the social isolation, stigmatization, if not outright discrimination, that these individuals often experience when interacting with the general public.
For individuals who have suffered a catastrophic insult to the head or face, vascularized composite allotransplantation (VCA) may be a viable treatment option when the injuries are not amenable to treatment with traditional surgical procedures. The past decade has provided an inspiring glimpse at the great potential of vascularized composite allotransplantation. However, the ultimate promise of these procedures may be hampered by a number of factors. The possibility of donation for vascularized composite allotransplantation likely is unknown to many individuals in the general public and, for others, subject to misperceptions and fears. For example, many individuals are likely unaware of the profound emotional suffering experienced by many recipients. Others may be concerned about the impact of donation on the appearance of the deceased donor,whether it be themselves or a loved one. The ultimate success and impact of vascularized composite allotransplantation in the future turns on the willingness of individuals to designate themselves as possible donors or have their family decision makers be willing to consider vascularized composite allotransplantation donation along with more standard donation of solid organs.
Over the past several years, studies have suggested that the acceptability of vascularized composite allotransplantation donation is less than that for solid organ donation. However, a sizable minority of individuals report that they would provide a facial allograft. Thus, there appears to be some level of acceptability of vascularized composite allotransplantation in the general population. The present study builds on this work. Plana and colleagues found that a brief educational introduction to face transplantation, designed to correct common misperceptions about the procedure, had a positive impact on an individual’s willingness to donate a facial allograft in the future. Willingness to donate varied by age, gender, ethnicity, religion, and education level, as is often seen in studies of potential solid organ donors.
These results, while preliminary and in need of replication to enhance generalizability, are very encouraging. Brief educational interventions are used to promote a wide range of health behaviors and play an important role in a number of large public health campaigns. Similar interventions have been used with great success in other areas of medicine, such as solid organ donation and gene therapy. Results of this study provide an important foundation to the development and use of a more sophisticated, theoretically based educational intervention that could be used to positively impact attitudes toward disfigurement as well as vascularized composite allotransplantation donation. This research approach is more commonly seen in public health and other areas of medicine; it is rather novel to plastic surgery. Regardless, the impact of further research on society’s views on disfigurement and vascularized composite allotransplantation could have an immeasurable impact on the care of individual patients who could benefit from these procedures in the future.
Disclosure: Dr. Sarwer is currently a member of the Board of Directors of the American Board of Plastic Surgery. He has consulting relationships with Allergan, BARONova, Medtronic, and Novo Nordisk. Dr. Siminoff reported no disclosures.
As the field of vascularized composite tissue allograft transplantation continues to evolve, however, the present study should provide optimism regarding the ability to increase public willingness to donate swiftly and ethically through educational initiatives.
The authors thank Daisy Gonzalez, B.S., Scott Briggs, B.S., Salma Abdou, B.S., and Lauren Rangel, B.S., for help administering surveys for this study. The authors also wish to thank Ari Kirshenbaum, Ph.D., for aid in the statistical analyses for this study.
Patient provided written consent for the usage of patient’s images.
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