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Comprehensive Assessment of Vascularized Composite Allotransplantation Patient-Oriented Online Resources
Noel, Daphney Y; Kimberly, Laura L; DeMitchell-Rodriguez, Evellyn M; Levy-Lambert, Dina; Ramly, Elie P; Alfonso, Allyson R; Jacoby, Adam; Gelb, Bruce E; Diaz-Siso, J Rodrigo; Kantar, Rami S; Rodriguez, Eduardo D
INTRODUCTION/BACKGROUND:Online resources have become a major source of medical information for the general public. To date, there has not been an assessment of patient-oriented online resources for face and upper extremity transplantation candidates and patients. The goal of this study is to perform a comprehensive assessment of these resources. METHODS:Our analysis relied on 2 dimensions: comprehensiveness and readability. Comprehensiveness was evaluated using 14 predetermined variables. Readability was evaluated using 8 different readability scales through the Readability Studio Professional Edition Software (Oleander Software, Ltd, Vandalia, Ohio). Data were also collected from solid organ transplantation (SOT), specifically kidney and liver, programs for comparison. RESULTS:Face and upper extremity transplantation programs were significantly more likely to list exclusion criteria (73.9% vs 41.2%; P = 0.02), the need for life-long immunosuppression (87.0% vs 58.8%; P = 0.02), and benefits of transplantation (91.3% vs 61.8%; P = 0.01) compared with SOT programs. The average readability level of online resources by all face and upper extremity transplantation programs exceeded the sixth grade reading level recommended by the National Institutes of Health and the American Medical Association. The average reading grade level of online resources by these programs was also significantly higher than those of SOT with both exceeding the recommended reading level (13.95 ± 1.55 vs 12.60 ± 1.65; P = 0.003). CONCLUSIONS:Future efforts in face and upper extremity transplantation should be directed toward developing standardized, comprehensive, and intelligible resources with high-quality content and simple language.
PMID: 31232818
ISSN: 1536-3708
CID: 3963522
Self-Inflicted Gunshot Wound as a Consideration in the Patient Selection Process for Facial Transplantation
McQuinn, Michelle W; Kimberly, Laura L; Parent, Brendan; Diaz-Siso, J Rodrigo; Caplan, Arthur L; Blitz, Aileen G; Rodriguez, Eduardo D
Facial transplantation is emerging as a therapeutic option for self-inflicted gunshot wounds. The self-inflicted nature of this injury raises questions about the appropriate role of self-harm in determining patient eligibility. Potential candidates for facial transplantation undergo extensive psychosocial screening. The presence of a self-inflicted gunshot wound warrants special attention to ensure that a patient is prepared to undergo a demanding procedure that poses significant risk, as well as stringent lifelong management. Herein, we explore the ethics of considering mechanism of injury in the patient selection process, referring to the precedent set forth in solid organ transplantation. We also consider the available evidence regarding outcomes of individuals transplanted for self-inflicted mechanisms of injury in both solid organ and facial transplantation. We conclude that while the presence of a self-inflicted gunshot wound is significant in the overall evaluation of the candidate, it does not on its own warrant exclusion from consideration for a facial transplantation.
PMID: 31298191
ISSN: 1469-2147
CID: 4009892
High Life Satisfaction: Exploring the Role of Health, Social Integration and Perceived Safety among Mexican Midlife and Older Adults
Camacho, David; Lee, Yookyong; Bhattacharya, Anindita; Vargas, Laura X; Kimberly, Laura; Lukens, Ellen
We sought to investigate the relationship of high life satisfaction with important physical health, mental health, social integration and perceived safety factors among midlife and older Mexican adults. We examined 2,200 midlife and older adults (aged 50-101 years) from the Mexican arm of the Study on global AGEing and adult health (SAGE) and used binary logistic regression models to identify key factors associated with high LSA. Our final logistic regression model revealed self-rated health, affect, interpersonal activities and perceived safety on street to be significantly associated with high life satisfaction. Results from this study add to the nascent literature on subjective well-being of midlife and older Mexicans. Although social work with older adults is not well established in Mexico, researchers and practitioners should collaborate on the development and implementation of social worker-led strategies for prevention and intervention to enhance well-being among midlife and older Mexicans.
PMID: 31140947
ISSN: 1540-4048
CID: 5012862
Emerging Ethical Challenges Raised by the Evolution of Vascularized Composite Allotransplantation
Caplan, Arthur L; Parent, Brendan; Kahn, Jeffrey; Dean, Wendy; Kimberly, Laura L; Andrew Lee, W P; Rodriguez, Eduardo D
BACKGROUND:Despite early skepticism, the field of vascularized composite allotransplantation (VCA) has demonstrated feasibility. The ethics of VCA have moved past doubts about the morality of attempting such transplant to how to conduct them ethically. METHODS:Leaders of each program performing and/or evaluating VCA in the United States were invited to participate in a working group to assess the state and future of VCA ethics and policy. Four meetings were held over the course of 1 year to describe key challenges and potential solutions. RESULTS:Working group participants concluded that VCA holds great promise as treatment for patients with particular injuries or deficits, but the field faces unique challenges to adoption as standard of care, which can only be overcome by data sharing and standardization of evaluation and outcome metrics. CONCLUSIONS:Adequate attention must be given to concerns including managing the uniquely intense physician-patient relationship, ethical patient selection, ensuring patients have adequate representation, informing and earning the trust of the public for donation, standardizing metrics for success, and fostering an environment of data sharing. These steps are critical to transitioning VCA from research to standard of care, and to its insurance coverage inclusion.
PMID: 30300280
ISSN: 1534-6080
CID: 3334912
Response to Authors Concern for Mischaracterization of Referenced Publications [Letter]
Motosko, Catherine C; Zakhem, George A; Ault, Anna K; Kimberly, Laura L; Gothard, M David; Ho, Roger S; Hazen, Alexes
PMID: 30092320
ISSN: 1097-6787
CID: 3226682
Analysis of Spin in the Reporting of Studies of Topical Treatments of Photoaged Skin
Motosko, Catherine C; Ault, Anna K; Kimberly, Laura L; Gothard, M David; Ho, Roger S; Hazen, Alexes
BACKGROUND:Spin-reporting that distorts the interpretation of results-is not unusual within scientific literature. OBJECTIVE:To appraise strategies of spin among placebo-controlled double-blind clinical trials of topical treatments for photoaged skin. METHODS:A systematic review of literature was performed to identify placebo-controlled double-blind clinical trials of topical treatments for photoaged skin. A survey of spin strategies was developed and applied to the cohort of identified studies. RESULTS:Systematic review identified 20 studies, all of which employed various spin strategies, broadly classified as either inappropriate statistical analysis or inappropriate interpretation of results. Most commonly used strategies included use of multiple primary outcomes (95%), inappropriate extrapolation of the results from specific outcome to global improvement (95%), focus on within-group comparison (75%), and focus on interim analyses to give more weight to nonsignificant findings (65%). LIMITATIONS/CONCLUSIONS:Classification of spin strategies is subjective and may not encompass all methods used by studies in the published literature. CONCLUSIONS:Findings in this study may inform efforts to reduce spin in the dermatologic literature.
PMID: 29689326
ISSN: 1097-6787
CID: 3053062
Women's Experiences and Perceptions of Depression in India: A Metaethnography
Bhattacharya, Anindita; Camacho, David; Kimberly, Laura L; Lukens, Ellen P
In India, social determinants of health, including poverty, domestic violence, and inadequate social support disproportionately affect women, leaving them more vulnerable to depression than men. We conducted a metaethnography to synthesize qualitative data from 13 studies (1987-2017) that explored women's experiences and perceptions of depression in India. We used a feminist standpoint to critically examine how gender shapes these experiences and perceptions. Indian women's experiences of depression were embedded in their social worlds. Women perceived interpersonal conflict, caregiving burden, domestic violence, financial insecurity, adverse reproductive events and widowhood as causes of depression. Women used cultural expressions to describe physical, emotional, and cognitive distress. The detrimental impact of discriminatory social conditions, gender inequalities, and traditional gender roles on Indian women's mental health highlights the need for gender-sensitive mental health research and practice that can attend to women's sociocultural context and promote values of gender equality and social justice.
PMID: 30799765
ISSN: 1049-7323
CID: 5012852
The Ethics of Psychosocial Assessment in Vascularized Composite Allotransplantation: A Call for Transparency of Process to Support the Equitable Selection of Patients
Kimberly, Laura L; McQuinn, Michelle W; Caplan, Arthur L; Levy-Carrick, Nomi C
As the field of vascularized composite allotransplantation (VCA) continues to evolve and technological approaches improve, VCA programs must focus on promoting greater consistency in psychosocial assessment across programs to support the equitable selection of patients. Based on a summary of published reports of VCA, we address the ethical considerations raised by the present heterogeneity of approaches to psychosocial assessment, including weighing risks and benefits, informed consent and the role of decisional capacity, and potential or perceived bias in the assessment process. We propose transparency of process across the field and encourage VCA programs to work collaboratively to share approaches to psychosocial assessment both pre- and post-transplant to promote health equity.
PMID: 31851623
ISSN: 1046-7890
CID: 5012872
Ethical Issues in Gender-Affirming Care for Youth
Kimberly, Laura L; Folkers, Kelly McBride; Friesen, Phoebe; Sultan, Darren; Quinn, Gwendolyn P; Bateman-House, Alison; Parent, Brendan; Konnoth, Craig; Janssen, Aron; Shah, Lesha D; Bluebond-Langner, Rachel; Salas-Humara, Caroline
Transgender and gender-nonconforming (TGNC) youth who suffer from gender dysphoria are at a substantially elevated risk of numerous adverse physical and psychosocial outcomes compared with their cisgender peers. Innovative treatment options used to support and affirm an individual's preferred gender identity can help resolve gender dysphoria and avoid many negative sequelae of nontreatment. Yet, despite advances in these relatively novel treatment options, which appear to be highly effective in addressing gender dysphoria and mitigating associated adverse outcomes, ethical challenges abound in ensuring that young patients receive appropriate, safe, affordable treatment and that access to this treatment is fair and equitable. Ethical considerations in gender-affirming care for TGNC youth span concerns about meeting the obligations to maximize treatment benefit to patients (beneficence), minimizing harm (nonmaleficence), supporting autonomy for pediatric patients during a time of rapid development, and addressing justice, including equitable access to care for TGNC youth. Moreover, although available data describing the use of gender-affirming treatment options are encouraging, and the risks of not treating TGNC youth with gender dysphoria are evident, little is known about the long-term effects of both hormonal and surgical interventions in this population. To support ethical decision-making about treatment options, we encourage the development of a comprehensive registry in the United States to track long-term patient outcomes. In the meantime, providers who work with TGNC youth and their families should endeavor to offer ethically sound, patient-centered, gender-affirming care based on the best currently available evidence.
PMID: 30401789
ISSN: 1098-4275
CID: 3520072
Long-distance care of face transplant recipients in the United States
Rifkin, William J; Manjunath, Amit; Kimberly, Laura L; Plana, Natalie M; Kantar, Rami S; Bernstein, G Leslie; Diaz-Siso, J Rodrigo; Rodriguez, Eduardo D
Promising aesthetic and functional outcomes in facial transplantation have fueled the interest of patients and providers alike. However, there are currently only 11 active face transplant centers in the United States, and only five have accumulated operative experience to date, resulting in an extremely unbalanced geographical distribution of providers. Since face transplant recipients must receive life-long follow-up, this presents unique challenges for face transplant candidates and provider teams, as long-distance travel may add considerable difficulty to pre- and post-transplant care. Furthermore, by compromising follow-up, this burden of travel may impact the ability of experienced face transplant centers to collect data, share knowledge as these patients are followed, and continue to advance the field. This article highlights the unique logistical and ethical implications of the highly probable long-distance nature of face transplant care in the United States, a challenging aspect of management that has not been previously discussed in the literature. Furthermore, we review current strategies in the long-distance management of solid organ transplantation (SOT) recipients, and propose several possibilities to help address these challenges in facial transplantation based on SOT experience.
PMID: 30244707
ISSN: 1878-0539
CID: 3314892