Facial Disfigurement and Identity: A Review of the Literature and Implications for Facial Transplantation.

Facial disfigurement can significantly affect personal identity and access to social roles. Although conventional reconstruction can have positive effects with respect to identity, these procedures are often inadequate for more severe facial defects. In these cases, facial transplantation (FT) offers patients a viable reconstructive option. However, FT's effect on personal identity has been less well examined, and ethical questions remain regarding the psychosocial ramifications of the procedure. This article reviews the literature on the different roles of the face as well as psychological and social effects of facial disfigurement. The effects of facial reconstruction on personal identity are also reviewed with an emphasis on orthognathic, cleft, and head and neck surgery. Finally, FT is considered in this context, and future directions for research are explored.

Entrevista familiar para doação de órgãos: conhecimentos necessários segundo coordenadores emtransplantes / Entrevista familiar para la donación de órganos: conocimientos requeridos por coordinadores en trasplantes / Family interview for organ donation: necessary knowledge according to coordinators in organ transplants

Objective: this study aimed to understand the importance attached to family interview within steps of organ donation by the multidisciplinary team in transplantation; and identify which skills are required for the interview. Method: a qualitative approach, a hermeneutic study; approved by the Ethics Committee nº 321/11. Data were obtained with twenty-four subjects in the period January/May 2012 by semi-structured interview with eight open questions. Results: family interview is regarded as crucial for the process of donation; it also represents a means of education and emotional support. It is necessary to have technical knowledge, know and believe in the donation process, have personal and professional characteristics specific to accomplish it, as well as know how to deal with family members. Conclusion: interview is recognized as an extremely important moment in this process, representing a crucial point, in which not only the technical knowledge is relevant but also the emotional preparation of the interviewer.

Objetivo: compreender a importância atribuída a entrevista familiar dentro dos passos da doação de órgãos pela equipe multidisciplinar de coordenadores avançados em transplantes; e, identificar quais conhecimentos são necessários para realização da entrevista na visão dos coordenadores. Método: abordagem qualitativa, estudo hermenêutico; aprovado pelo Comitê de Ética nº 321/11. Dados foram obtidos com vinte e quatro sujeitos, no período de jan/mai 2012, por entrevista semiestruturada contendo oito questões abertas. Resultados: a entrevista familiar é considerada como decisiva/determinante para o processo da doação, também representa meio educativo e de apoio emocional. É preciso ter conhecimentos técnicos, saber e acreditar no processo da doação, possuir características pessoais e profissionais específicas para realizá-la, assim como saber lidar com os familiares. Conclusão: a entrevista é reconhecida como um momento de extrema importância no processo, representando um ponto crucial no qual não somente o conhecimento técnico é relevante, mas também o preparo emocional do entrevistador.

Objetivo: este estudio tubo como objetivo entender la importancia que se concede a la entrevista familiar en los pasos de la donación de órganos por el equipo de coordinadores en trasplante; e indique qué habilidades son necesarias para la misma en el concepto de los cordinadores. Método: enfoque cualitativo, estudio hermenéutico; aprobado por el Comité de Ética nº 321/11. Datos se obtuvieron de 24 sujetos en enero/mayo 2012, mediante entrevistas semi–estructuradas. Resultados: la entrevista familiar es considerada como fundamental para el proceso de donación, representa un medio educativo y apoyo emocional. Se necesita experiencia, saber y creer en el proceso de donación, tener características personales y profesionales específicas para lograrla, así como la forma de tratar con los miembros de la familia. Conclusión: la entrevista es reconocida como un momento muy importante en el proceso, representa punto crucial que no sólo el conocimiento técnico es importante, pero también la preparación emocional del entrevistador.

Post-transplant adjustment--the later years.

As survival rates for pediatric solid organ transplantation have continued to improve, researchers and healthcare providers have increasingly focused on understanding and enhancing the HRQOL and psychosocial functioning of their patients. This manuscript reviews the psychosocial functioning of pediatric transplant recipients during the "later years," defined as more than three yr post-transplant, and focuses on the day-to-day impact of living with a transplant after the immediate period of adjustment and early years after surgery. Key topics reviewed include HRQOL, cognitive functioning, impact on the family, regimen adherence, and transition of responsibility for self-management tasks. Overall, pediatric transplant recipients evidence impairment in HRQOL, neuropsychological outcomes, and family functioning as compared to non-transplant recipients. However, the degree of impairment is influenced by a variety of factors including, disease severity, age, solid organ type, and study methodologies. Studies are limited by small samples, cross-sectional design, and the lack of universal assessment battery to allow for comparisons across solid organ populations. Areas for future research are discussed.

Intervention toolbox to promote immunosuppressant therapy adherence in adult renal transplant recipients.

OBJECTIVES: To provide a brief overview of published immunosuppressant therapy (IST) adherence interventions in adult renal transplant recipients (RTRs) and to describe the utility and aspects of an adherence toolbox for adult RTRs. SETTING: National independent specialty pharmacy. PRACTICE DESCRIPTION: IST adherence is critical to graft survival after a renal transplant. However, IST nonadherence occurs in a large proportion of adult RTRs. Although effective intervention strategies are needed to improve IST adherence, few intervention studies have been conducted in the adult RTR population. To address this gap in the literature, a randomized controlled trial of a patient-specific behavioral contracts intervention to improve IST adherence among adult RTRs has been implemented. PRACTICE INNOVATION: During the behavioral contracts intervention, researchers have developed a toolbox of practical and replicable items and strategies to address forgetfulness and confusion as barriers to IST adherence. CONCLUSION: An adherence toolbox that includes simple, practical, accessible mechanisms and strategies to improve IST adherence may benefit adult RTRs.

Quality of life in pediatric heart transplant recipients: a comparison with children with and without heart disease.

BACKGROUND: Little is known about the quality of life (QOL) of children with heart disease who undergo life-saving surgery. The aim of this multicenter study was to examine self- and parent-reported QOL outcomes in pediatric heart transplant recipients. METHODS: Pediatric heart transplant recipients/families (n = 174) from 7 transplant programs completed the Pediatric Quality of Life Inventory Generic Core Scales and Cardiac Module. Scores for the heart transplant sample were compared with non-transplant patients who had undergone conventional cardiac surgery and with a healthy child sample. Within the cardiac surgery group, heart disease/surgery was further categorized by severity/complexity. RESULTS: Heart transplant recipients were a mean age of 10.6 ± 4.7 years at a mean time post-transplant of 6.0 ± 4.1 years. By both self-report and parent proxy report, mean scores for heart transplant recipients were significantly lower than those in healthy children for physical and psychosocial QOL, including emotional and social functioning (p < 0.001), with 31.3% self-reporting significantly impaired psychosocial QOL scores. By self-report, there were no significant differences in emotional and social mean scores between the transplant and cardiac surgery groups. Transplant recipients reported significantly fewer cardiac symptoms than children with cardiac surgery (p < 0.01). Their self-reported school functioning scores were not significantly different from children with moderate to severe disease. CONCLUSION: Although pediatric heart transplant recipients experience significant symptomatic improvement, they remain at-risk for impaired psychosocial QOL, similar to children with residual or palliated heart disease. Assessment is needed to identify children at-risk and improve psychosocial outcomes.

Still sad after successful renal transplantation: are we failing to recognise depression? An audit of depression screening in renal graft recipients.

BACKGROUND: Depression is common in chronic physical illness, including renal graft recipients. There is evidence that depression is an independent marker of poorer prognosis in dialysis patients. In the UK, screening is advocated by the National Institute for Health and Clinical Excellence guidelines, and validated screening tools exist, such as the Beck Depression Inventory (BDI). METHODS: We audited our renal graft recipient outpatient clinic to see if screening was being undertaken by our clinicians, and to confirm the rates of depressive symptoms in our population as reported by the BDI. RESULTS: In a sample of 58 transplant patients, we found that the screening rate for depression was poor, particularly by nephrologists (n = 8, 13.8%). In addition, 13 (22.4%) of our patients had significant depressive symptoms (BDI score ≥ 16). Following univariate analysis, we found that the most important predictor of current significant depressive symptoms was a past history of depression. CONCLUSIONS: Despite the limitations of our small audit, our results confirm that depression is under-screened in renal graft recipients, even in those with a known history of depression. We recommend increased awareness of depression and implementation of regular screening in an outpatient setting; in this regard, the BDI may have utility.

Beyond the 'embryo question': human embryonic stem cell ethics in the context of biomaterial donation in the UK.

Discussion about the ethics of human embryonic stem cell (ESC) research in the UK tends to be dominated by the divisive and potentially intractable issue of the moral status of the embryo. This can have the effect of silencing or marginalizing other concerns, especially in the context of public engagement with science in this field. One such area of potential public concern is the donation of oocytes and embryos to stem cell research. Contemporary research on the views of donors and potential donors about a wide range of biomaterials, from solid organs to gametes and bone marrow, is reviewed and used to illustrate the range and types of ethical concerns articulated by this important group of stakeholders. Attitudes to donation are found to vary according to the type of tissue being donated or collected, the purpose for which donation is being sought and the nature of the recipient of the donation. Pertinently, attitudes towards donating oocytes are found to differ in some respects from donation of embryos or fetal tissue. The implications of these findings for ensuring ethically robust informed consent and publicly acceptable sourcing of human biomaterials for stem cell research are then considered.

The role of E-mentorship in a virtual world for youth transplant recipients.

Because of geographic distances, many youth transplant recipients do not have the opportunity to meet and form relationships with peers who have undergone similar experiences. This article explores the role of E-mentorship in virtual environments. Most specifically, by analyzing data from a study conducted with the Zora virtual world with pediatric transplant recipients, suggestions and recommendations are given for conceiving the role of virtual mentors and allocating the needed resources. Zora is a graphical virtual world designed to create a community that offers psychoeducational support and the possibility of participating in virtual activities following a curriculum explicitly designed to address issues of school transition and medical adherence. Activities are designed to foster relationships, teach technological skills, and facilitate the formation of a support network of peers and mentors.This article addresses the research question, "What makes a successful E-mentorship model in virtual worlds for children with serious illnesses?" by looking at E-mentoring patterns such as time spent online, chat analysis, initiation of conversation, initiation of activities, and out-of-world contact.

Psychological adaptation and quality of life of adult intestinal transplant recipients: University of Bologna experience.

INTRODUCTION: Intestinal transplantation has become an accepted therapy for individuals permanently dependent on total parenteral nutrition (TPN) with life-threatening complications. Quality of life and psychological well-being can be seen as important outcome measures of transplantation surgery. METHODS: We evaluated 24 adult intestinal transplant recipients and 24 healthy subjects (a control group). All subjects were administered the Italian Version of the Psychological Well-Being Scales (PWB) by C. Ryff, the World Health Organization Quality of Life-Brief (WHOQOL), and the Symptom Questionnaire (SQ) by R. Kellner and G.A. Fava, a symptomatology scale. Quality of life and psychological well-being were assessed in transplant recipients in relationship to the number of rejections, the number of admissions, and the immunosuppressive protocol. RESULTS: Intestinal transplant recipients reported significantly higher scores in the "personal growth" category (P = .036) and lower scores in the "positive relation with others" (P = .013) and "autonomy" (P = .007) dimensions of PWB, compared with the controls. In the WHOQOL, the scores of transplant recipients were lower only in the psychological domain (P = .011). Transplant recipients reported significantly higher scores in the "somatic symptom" (P = .027) and "hostility" (P = .018) dimensions of the SQ, compared with the controls. Transplant recipients with number of admissions >8 reported higher scores in "anxiety" (P = .019) and "depression" (P = .021) scales of the SQ, and the patients with a Daclizumab protocol reported higher scores in "depression" (P = .000) and "somatic symptom" (P = .008) of the SQ. There were no significant differences regarding number of rejections and socio-demographic variables. CONCLUSION: Improvement of psychological well-being in the transplant population may be related to the achievement of the goal of transplantation: recovery of bowel function. But the data confirmed that the transplant experience required a long and difficult adaptation trial to the new condition of "transplant recipient."

Pretransplant predictors of posttransplant adherence and clinical outcome: an evidence base for pretransplant psychosocial screening.

INTRODUCTION: There is growing awareness, yet scant prospective evidence that pretransplant (TX) psychosocial factors may predict post-TX outcome. We examined which pre-TX psychosocial factors predict post-TX nonadherence with immunosuppression (NA) and clinical outcomes in heart, liver, and lung TX. METHODOLOGY: We prospectively followed 141 patients (28 heart, 61 liver, and 52 lung) from pre-TX until 1 year post-TX. Multivariable analyses determined which pre-TX factors (i.e., anxiety, depression, personality traits, social support, adherence with medication, and smoking status) predict poor post-TX outcome (i.e., NA, late acute rejection, graft loss, and resource utilization), controlling for medical predictors of poor outcome. RESULTS: Pre-TX self-reported medication nonadherence (odds ratio [OR]=7.9), lower received social support (OR=0.9), a higher education (OR=2.7), and lower "conscientiousness" (OR=0.8) were independent predictors of post-TX NA. Not living in a stable relationship predicted graft loss (OR=4.9). Pre-TX medication NA was the only predictor for presence of late acute rejection (OR=4.4). No other pre-TX predictors for poor outcome could be found. CONCLUSION: This is the first prospective study demonstrating that selected pre-TX psychosocial factors predict post-TX NA and poor clinical outcome, implying that pre-TX screening should include this set of factors in addition to traditional medical criteria.

Psychosocial implications of disfigurement and the future of human face transplantation.

Although the first face transplants have been attempted, the social and psychological debates concerning the ethics and desirability of the procedure continue. Critics contend that these issues have not yet been sufficiently addressed. With this in mind, the present article seeks to elaborate on key psychological and social factors that will be central for addressing the ethical and psychosocial challenges necessary to move face transplantation into mainstream medicine. The goals of this article are to (1) discuss the psychosocial sequelae of facial disfiguration and how face transplantation may relieve those problems, and (2) delineate inclusion and exclusion criteria for the selection of research subjects for face transplantation. The article uses concepts from symbolic interaction theory in sociology to articulate a theoretically coherent scheme for comprehending the psychosocial difficulties of facial disfiguration and the advantages offered by facial transplantation. The authors conclude that the psychosocial implications of disfigurement warrant surgical intervention and that research in the area of face transplantation should continue.

Medication noncompliance and its implications in transplant recipients.

The transplant patient's therapeutic regimen consists of a lifelong drug therapy, including immunosuppressive drugs, prophylactic antimicrobials and often medications for the treatment of hypertension, diabetes mellitus and other comorbid diseases. Regular clinic appointments are required to monitor for signs and symptoms of immunological injury, recurrent disease and adverse drug effects. Patients are instructed to avoid risk factors for cardiovascular disease and cancer (e.g. diet, exercise, sun protection and not smoking). Noncompliance with all aspects of this regimen is substantial. Medication noncompliance leads to an increased incidence of acute rejection, chronic rejection and graft loss. Undoubtedly, many practitioners fail to appreciate the extent of noncompliance as the signs are often subtle and most patients are unwilling to disclose deliberate or widespread disregard for medication use. Newer immunosuppressive agents, particularly once-daily medications and long-acting antibody preparations offer convenience and monitoring that may improve compliance. This review focuses on the prevalence, correlates and consequences of medication nonadherence after organ transplantation. Current recommendations to enhance adherence are discussed.

Poor uptake of reproductive health screening services by female renal transplant recipients.

Women with functioning renal transplants are a high-risk group for de novo malignancies and other gynaecological health problems. The objective of this study was to assess patients' awareness of gynaecological issues, and to assess uptake of cervical and breast cancer screening services. A structured questionnaire on family planning, menopausal issues and knowledge/use of cervical and breast cancer screening was administered to 64 female renal transplant recipients. 58 (91%) responded to the questionnaire. Mean age at first transplantation was 35 years (range 11 - 69). 84% were aware as to why they should have regular cervical smears. 15 (26%) had, however, never had a smear and only 9 (16%) were having yearly smears. 12 of 28 postmenopausal women entered the menopause under the age of 41 years, but only 5 of these had received Hormone Replacement Therapy. Breast self examination is practiced by 71%, but only 26% have had mammograms. These figures suggest that female renal transplant patients are not adequately screened for cervical and breast cancer. The results also indicate a need for further education regarding family planning issues and menopausal health concerns. We conclude that formal gynaecological review should be routinely available for women with renal transplants.

Review of evidence that posttransplantation psychiatric treatment commonly affects prolactin levels and thereby influences graft fate.

Delirium, depression and other psychiatric difficulties are commonly encountered by posttransplantation patients, and antipsychotic medicines are frequently used to treat these difficulties. This article reviews previous research data concerning the immunological effects of these medicines, with particular focus on the consequences of prolactin elevation. Unproven but of concern is that these effects may influence graft fate. Older antipsychotic medicines such as haloperidol and chlorpromazine have a high likelihood of elevating prolactin. Prolactin is an immunologically active molecule generally promoting bone marrow function. This may be of benefit post-stem-cell transplant, helping engraftment, but could further rejection of solid-organ transplants. Elevated prolactin is implicated in the facilitation of graft-versus-host disease. Aripiprazole is the antipsychotic medicine least likely to increase prolactin (and may actually decrease prolactin); risperidone, the most likely to increase prolactin. Olanzapine, quetiapine and ziprazadone are antipsychotic medicines with a lower likelihood of elevating prolactin. Older ("neuroleptic") antipsychotics, such as chlorpromazine, droperidol and haloperidol, perphenazine and many others, are likely to elevate serum prolactin. Among antidepressants, most serotonin reuptake inhibitors, with the exception of sertraline, can slightly elevate prolactin. The atypical (i.e., alone in their class) antidepressants bupropion and mirtazapine are prolactin neutral. The immunological consequences of psychiatric medicines should be considered when treating transplant patients for delirium, depression and thought disorders; in addition, if elevation of prolactin is thought to be of immunological importance during psychiatric treatment, then it should be monitored and treated. The dopamine agonists used to treat Parkinson's disease--bromocriptine, pergolide, pramipexole, ropinerole--usually reverse antipsychotic-induced prolactin increases without compromising psychiatric effectiveness.

Investigation of risk acceptance in hand transplantation.

PURPOSE: Twenty-four hands have been transplanted in 18 individuals and clinicians continue to debate whether the risks justify the benefits in these procedures. To assess quantitatively the risks versus benefits in hand transplantation we used a validated instrument (Louisville Instrument for Transplantation) to measure the degree of risk individuals are willing to accept to receive different types of transplantation procedures. METHODS: The Louisville Instrument for Transplantation contains 237 standardized questions that incorporate modified standard gamble and time trade-off outcome measures and questions that assess body image perception, depression, self-esteem, optimism, socially desirable responding, and demographics. Respondents were questioned on the extent to which they would trade off specific numbers of life-years or sustain other costs in exchange for receiving 7 different transplantation procedures. For this study we questioned 227 individuals in 4 study populations with differing life experiences: healthy individuals, organ transplant recipients, upper-extremity amputee patients, and lower-extremity amputee patients. RESULTS: All populations questioned perceived risk similarly despite their differing life experiences and would accept differing degrees of risk for the different transplantation procedures. Organ transplant recipients were the most risk-tolerant group whereas upper-extremity amputee patients were the most risk adverse, even when considering a single hand transplant. All groups that were questioned would accept a higher degree of risk to receive a double versus a single hand transplant. CONCLUSIONS: By questioning individuals who have experienced directly the risks of immunosuppression and those who could benefit from hand transplantation, this study presents an empiric basis for assessing risk versus benefit in this procedure.

A national study of burnout among American transplant surgeons.

This study examines burnout in a national sample of transplant surgeons. Data analyses were conducted on a sample of 209 actively practicing transplant surgeons. Measures included the Maslach Burnout Inventory, a demographic survey, and the Surgeon Coping Inventory. Burnout was reflected in 38% of surgeons scoring high on the Emotional Exhaustion dimension, whereas 27% showed high levels of Depersonalization, and 16% had low levels of Personal Accomplishment. Several significant predictors of emotional exhaustion were identified and included questioning one's career choice, giving up activities, and perceiving oneself as having limited control over the delivery of medical services (R2= 0.43). Those who perceived themselves as having a higher ability to control delivery of medical services and who felt more appreciated by patients had lower levels of depersonalization and were less likely to question their career choice (R2= 0.16). Surgeons with high personal accomplishment experienced greater professional growth opportunities, perceived their institution as supportive, felt more appreciated by patients, and were less likely to question their career (R2= 0.24). The prioritization of goals to reflect both professional and personal values accounted for a significant amount of the variance in predicting both emotional exhaustion and personal accomplishment in separate regression equations. Recommendations to decrease burnout would include greater institutional support, increased opportunities for professional growth, and greater surgeon control over important services to facilitate efficient work. Coping strategies to moderate stress and burnout are also beneficial and should include prioritizing goals to reflect both professional and personal values.

Face transplantation: Part II-an ethical perspective.

In May 2004, researchers at the University of Louisville Medical Center in Kentucky submitted a 30-page detailed document to the University's Institutional Review Board (IRB) that outlines their plan for the first face transplant. Despite the fact that both the Royal College of Surgeons in England in 2003 and France's Comite Consultatif National d'Ethique in 2004 issued reports saying that the risks of this surgery far outweigh the benefits tojustify it at the present time, the IRB at the University of Louisville is presently studying the proposal. Even though the microsurgical skills and anatomical knowledge is well established, face transplantation is more than a matter of technical achievement. The psychological impact on recipients and donor families as well as the long-term risks of a lifetime of immunosuppressant drugs must also be considered. More time is needed to perfect this surgery so that the rejection rate can be lowered and the patient's immune system can be taught to permanently tolerate the transplanted face. An ethical analysis will show that more time is needed to perfect this surgery so that the rejection rate can be lowered and the patient's immune system can be taught to permanently tolerate the transplanted face. To permit this surgery now, when there are so many unknown, life-threatening dangers would be medically irresponsible and ethically objectionable.