"I Didn't Know What I Didn't Know:" Assessment of Adolescent Oncology Patient Engagement in Decision-Making.

INTRODUCTION: Little is known about the best way to engage an adolescent oncology patient in decision-making. To integrate adolescent oncology patients most effectively in decision-making, it is important to understand their perceptions not only as adolescents but also as adult survivors who have had time to reflect upon their experience. The purpose of this study is to explore perceptions of survivors of pediatric cancer to better understand their attitudes toward participation in decision-making, decisional regret, and use of decision-support tools. METHODS: An electronic survey tool, containing open- and closed-ended responses, was distributed to adult cancer survivors diagnosed and treated for cancer between the ages of 9 and 18 at a Midwestern, Comprehensive Cancer Center within a tertiary care academic hospital. RESULTS: Seventy responses were received. Nearly all respondents (96%) reported that decisions made on their behalf were consistent with their desires most/all the time. Almost one-fifth felt that increased involvement would have intensified their anxiety. Eighty-five percent did not regret choices made about their cancer treatment, and 88% would have made the same choices again. Respondents desired more targeted information on the long-term impacts of treatment (i.e., infertility, memory difficulties, mental health concerns), and they highlighted the importance of communication in the decision-making process. CONCLUSIONS: Adolescents want to participate in the decision-making process in a way that accommodates their understanding of the pathology and potential impacts of treatment. Our results suggest that developing a simple intervention to help facilitate provision of such anticipatory guidance may be helpful.

Chang Gung Forum: An Exemplary Strategy for Implementing a Multidisciplinary Network of Experts in Craniofacial Anomalies.

INTRODUCTION: The Chang Gung Forum has been dedicated to the care of craniofacial anomalies since 2000. This annual continuing medical education program focuses on orofacial cleft and surgery-first orthognathic surgery by providing up-to-date information and management guidelines. This study explored how the Chang Gung Forum has influenced medical perspectives, decisions, and practices in a multidisciplinary craniofacial team. METHODS: Between 2000 and 2022, 20 Chang Gung Forums have been held. A questionnaire was distributed among 170 attendees who had participated in the forum more than once. The questionnaire collected information on the participants' experiences and levels of satisfaction with the educational program and whether or how it had influenced their clinical practice. RESULTS: Valid responses from 86 attendees (response rate, 50.6%) who had participated more than once were collected and analyzed. The overall satisfaction rate of the Chang Gung Forum based on the respondents' most recent visits was 4.28 ± 0.63 out of 5. Of the respondents, 90.9% acknowledged changes in their clinical practice, with modifications in surgery plans and decisions being the most notable (48.5%). In addition, comprehension increased throughout years of attending the annual forum (P < 0.001). CONCLUSION: The Chang Gung Forum has contributed markedly to the community of congenital craniofacial anomalies. The program will continue providing updated information and influencing the clinical decision-making of health care professionals.

The Rise of Online Medical Education in Craniofacial Surgery.

BACKGROUND: International travel had been radically disrupted by coronavirus disease 2019 (COVID-19), leaving traditional medical conferences on a 2-year hiatus. The International Craniofacial Chang Gung Group (ICC) was thus created to disseminate knowledge related to craniofacial surgery. This study aimed to reveal how webinars fundamentally transformed the traditional format of medical conferences. MATERIALS AND METHOD: In total, 64 ICC webinars held between December 13, 2020, and May 21, 2023, were documented and reviewed. A questionnaire was designed and sent to ICC members. The questionnaire collected information on attitudes and habits relating to videoconferencing in general before and after the start of COVID-19 and on the ICC webinars specifically. Responses were analyzed to inform our understanding of respondents' experience and satisfaction with the webinars. RESULTS: The webinars covered a variety of topics related to craniofacial surgery. In total, 64 webinars were included for analysis. The mean number of attendees at each webinar was 86.7. In total, 111 respondents were more satisfied (4.25 ± 0.72 out of 5) with ICC webinars than with other media of online meetings ( P < 0.001). In total, 89.2% of respondents were willing to continue attending ICC webinars after COVID-19 restrictions have been lifted. CONCLUSIONS: Webinars are an effective format for imparting knowledge, especially in the ICC, and will become key in continuing medical education.

Social support and transplantation.

PURPOSE OF REVIEW: Social support has many benefits for patients undergoing organ transplantation, though inclusion of it as criteria for transplant listing has been debated. This review highlights recent developments in the research regarding social support and organ transplantation, including the impact of social support on transplantation and caregivers, interventions, COVID-19, and ethical perspectives. RECENT FINDINGS: Social support and perceived social support have benefits for transplant patients, including increased quality of life and adherence. The providers of social support may also be impacted and the impact may vary based on patient and caregiver characteristics, including organ group and caregiver ethnicity. Debates regarding COVID-19 vaccine requirements for caregivers and ethical concerns about the inclusion of social support as criteria for transplant listing are also explored. SUMMARY: Transplant patients benefit from social support, though additional research is needed on the impact of social support on transplant outcomes and the utility of the use of social support as criteria for transplant listing. There is also a need for more robust research on diverse caregiver populations, including the identification and use of supportive interventions for caregivers.

Findings and recommendations from the organ transplant caregiver initiative: Moving clinical care and research forward.

Lay-caregivers are essential to the continuum of care in adult organ transplantation. However, we have a limited understanding of the experiences, exigencies, and outcomes associated with lay-caregiving for organ transplant patients. While much discussion and debate has focused on caregiver requirements in relation to transplant candidate selection, little focus has been given to understanding the needs of caregivers themselves. In response to this, the Organ Transplant Caregiver Initiative was created, and a meeting was held during October 6-7, 2019. Transplant healthcare professionals, researchers, and lay-caregivers discussed the experiences, educational needs, existing research, and research recommendations to improve the experience of lay-caregivers for adult organ transplant patients. In this report, we summarize the Organ Transplant Caregiver Initiative and meeting findings, providing a preliminary action plan to improve education, research, and advocacy for organ transplant caregivers.

A Patient With Oral Discomfort and Reduced Oral Aperture.

A patient had burning and pain in the mouth, reduced oral aperture, white-tan plaques on the oral mucosa, and thickened buccal mucosae bilaterally; biopsy of the lower labial mucosa showed subepithelial fibrosis. She had no history of cigarette smoking or use of chewing tobacco but had current and past history of chewing areca nuts. What is the diagnosis and what would you do next?

Animal Models of Diabetic Retinopathy.

PURPOSE OF REVIEW: Diabetic retinopathy (DR) is one of the most common complications associated with chronic hyperglycemia seen in patients with diabetes mellitus. While many facets of DR are still not fully understood, animal studies have contributed significantly to understanding the etiology and progression of human DR. This review provides a comprehensive discussion of the induced and genetic DR models in different species and the advantages and disadvantages of each model. RECENT FINDINGS: Rodents are the most commonly used models, though dogs develop the most similar morphological retinal lesions as those seen in humans, and pigs and zebrafish have similar vasculature and retinal structures to humans. Nonhuman primates can also develop diabetes mellitus spontaneously or have focal lesions induced to simulate retinal neovascular disease observed in individuals with DR. DR results in vascular changes and dysfunction of the neural, glial, and pancreatic ß cells. Currently, no model completely recapitulates the full pathophysiology of neuronal and vascular changes that occur at each stage of diabetic retinopathy; however, each model recapitulates many of the disease phenotypes.

Biologics for Psoriasis.

Biologic therapies targeting tumor necrosis factor alpha (TNF-α) (infliximab, adalimumab, certolizumab, etanercept), the p40 subunit shared by IL-12 and IL-23 (ustekinumab), the p19 subunit of IL-23 (guselkumab, tildrakizumab, risankizumab), IL-17A (secukinumab, ixekizumab), IL-17-RA (brodalumab) and both IL-17A and IL-17F (bimekizumab) have revolutionized the treatment of psoriasis. In both the short and long term, risankizumab had highest Psoriasis Area and Severity Index 90 scores compared to other oral and injectable biologics. IL-23 inhibitors had lowest rates of short-term and long-term adverse events and most favorable long-term risk-benefit profile compared to IL-17, IL-12/23, and TNF-α inhibitors.

Prevalence and association of polycystic ovary syndrome and hidradenitis suppurativa in underrepresented groups.

Hidradenitis suppurativa (HS) is an inflammatory disorder of follicular biology; androgens are believed to be involved in its pathogenesis. Polycystic ovary syndrome (PCOS) is similarly characterized by hyperandrogenism. Previous studies have found a lasting association of HS and PCOS. Socioeconomic status (SES) has been described as a comorbidity for both HS and PCOS that has not been accounted for in prior studies; we sought to investigate this association while adjusting for this. We also analyzed the prevalence of PCOS among HS patients. Using the All of Us database, female HS patients were stratified by PCOS diagnosis and compared by age, race, and ethnicity. Female HS patients were also nearest-neighbor propensity-score matched to controls at a 4:1 ratio, selecting for race, ethnicity, age, ever smoker, alcohol use disorder, obesity, type II diabetes, Medicaid status, and community deprivation index. Univariable and multivariable logistic regression was conducted to estimate the effect of HS on the presence of PCOS. The distribution of race among HS patients with PCOS was significantly different than HS patients without PCOS. A total of 1,022 female HS patients and 4,088 matched female controls were included. Significantly more patients carried a diagnosis of PCOS compared to controls (8.8% versus 4.3%, p < .001). In multivariable logistic regression, PCOS was significantly associated with HS [OR 1.71 (95% CI 1.34-2.17)]. This is the first study investigating the association of HS and PCOS within the All of Us database. We found that females with HS had a 1.34- to 2.17-fold increased odds of having PCOS, which is consistent with previous analyses. However, our analysis, in addition to controlling for common medical co-morbidities found in both HS and PCOS, also accounts for markers of SES at an individual and community level, further strengthening the association of HS with PCOS.

Pharmacologic Ascorbate Radiosensitizes Pancreatic Cancer but Radioprotects Normal Tissue: The Role of Oxidative Stress-Induced Lipid Peroxidation.

The toxicity of ionizing radiation limits its effectiveness in the treatment of pancreatic ductal adenocarcinoma. Pharmacologic ascorbate (P-AscH-) has been shown to radiosensitize pancreatic cancer cells while simultaneously radioprotecting normal cells. We hypothesize that P-AscH- protects the small intestine while radiosensitizing pancreatic cancer cells partially through an oxidative stress mechanism. Duodenal samples from pancreaticoduodenectomy specimens of patients who underwent radio-chemotherapy ± P-AscH- and mouse tumor and jejunal samples treated with radiation ± P-AscH- were evaluated. Pancreatic cancer and non-tumorigenic cells were treated with radiation ± P-AscH- to assess lipid peroxidation. To determine the mechanism, pancreatic cancer cells were treated with selenomethionine or RSL3, an inhibitor of glutathione peroxidase 4 (GPx4). Radiation-induced decreases in villi length and increases in 4-HNE immunofluorescence were reversed with P-AscH- in human duodenum. In vivo, radiation-induced decreases in villi length and increased collagen deposition were reversed in P-AscH--treated jejunal samples. P-AscH- and radiation increased BODIPY oxidation in pancreatic cancer cells but not in non-tumorigenic cells. Selenomethionine increased GPx4 protein and activity in pancreatic cancer and reversed P-AscH--induced toxicity and lipid peroxidation. RSL3 treatment inhibited GPx4 activity and increased lipid peroxidation. Differences in oxidative stress may play a role in radioprotecting normal cells while radiosensitizing pancreatic cancer cells when treated with P-AscH-.

Lessons learned: Development of an organ transplant caregiver educational resource.

BACKGROUND: Organ transplant lay caregivers perform an essential and complex role, but there is a paucity of comprehensive, accessible education regarding transplant caregiving. We sought to create a broad, multifaceted educational toolkit for transplant caregivers. Given the complexities of this population, we report on lessons learned by organising diverse stakeholder engagement to develop an educational resource covering the breadth and depth of organ transplantation. APPROACH: Following a call from organ transplant patients and caregivers, the American Society of Transplantation (AST) formed an Organ Transplant Caregiver Initiative with the aim to develop a comprehensive educational toolkit for transplant caregivers. The AST Organ Transplant Caregiver Toolkit was created through a shared, multi-step process involving transplant professionals and caregivers, who formed an education subcommittee to develop and refine content domains. The caregiver toolkit was reviewed with relevant external stakeholders and through an internal organisational review process. EVALUATION: Lessons learned included seeking guidance from others with experience creating similar resources, flexibility in project development, creativity in engaging stakeholders and routine communication between all entities involved. Insights gained contributed to the caregiver toolkit completion despite project challenges. IMPLICATIONS: The AST Organ Transplant Caregiver Toolkit can be utilised by health care professionals to educate and counsel transplant patients and caregivers. Lessons learned from the development of the caregiver toolkit can provide guidance to health care professionals and clinical teachers for the development of future education resources.

Occlusion-Based Three-Dimensional Craniofacial Anthropometric and Symmetric Evaluation in Preadolescences: A Comparative COHORT Study.

BACKGROUND: The importance of early diagnosis of pediatric malocclusion and early intervention has been emphasized. Without use of radiation, 3D imaging holds the potential to be an alternative for evaluating facial features in school-aged populations. METHODS: Students aged 9 and 10 years were recruited. We performed annual 3D stereophotogrammetry of the participants' heads. A total of 37 recognizable anatomical landmarks were identified for linear, angular, and asymmetric analyses using the MATLAB program. RESULTS: This study included 139 healthy Taiwanese children with a mean age of 9.13, of whom 74 had class I occlusion, 50 had class II malocclusion, and 15 had class III malocclusion. The class III group had lower soft-tissue convexity (p = 0.01) than the class II group. The boys with class II malocclusion had greater dimensions in the anteroposterior position of the mid-face (p = 0.024) at age 10. Overall asymmetry showed no significance (p > 0.05). Heat maps of the 3D models exhibited asymmetry in the mid-face of the class II group and in the lower face of the class III group. CONCLUSION: Various types of malocclusion exhibited distinct facial traits in preadolescents. Those with class II malocclusion had a protruded maxilla and convex facial profile, whereas those with class III malocclusion had a less convex facial profile. Asymmetry was noted in facial areas with relatively prominent soft-tissue features among different malocclusion types.

The Impact of Health Literacy on Kidney Transplant Listing.

Introduction: Limited health literacy has been associated with poor health outcomes in the general population, but there have been few studies investigating the association between functional health literacy and kidney transplant listing. The primary objective of this study was to determine if functional health literacy was associated with kidney transplant listing after controlling for demographic, psychosocial, and medical variables, which were secondarily examined for correlation with transplant listing. Design: We retrospectively reviewed 423 kidney transplant candidates who were prospectively administered the Test of Functional Health Literacy in Adults during their transplant evaluation. Results: The functional health literacy scores were found to correlate with transplant listing (P = 0.013). Unexpectedly, a subset of patients (n = 14 out of 36) who had scores < 59 was still able to obtain approval for listing. The probability of approval decreased when functional health literacy scores ranged from 0 to 59 and increased when functional health literacy scores varied between 60 to 100. Multivariable analysis found transplant listing to also be associated with substance use (OR = 0.15, P < 0.001), ESKD etiology other than diabetes or hypertension (OR = 2.62, P < 0.001), time on dialysis (P = 0.012), and pace of transplant evaluation (P < 0.001). Conclusion: Functional health literacy was associated with kidney transplant listing. Programmatic interventions that can help overcome the impact of functional health literacy and improve access to transplantation should be explored.

Auranofin and Pharmacologic Ascorbate as Radiomodulators in the Treatment of Pancreatic Cancer.

Pancreatic cancer accounts for nearly one fourth of all new cancers worldwide. Little progress in the development of novel or adjuvant therapies has been made over the past few decades and new approaches to the treatment of pancreatic cancer are desperately needed. Pharmacologic ascorbate (P-AscH-, high-dose, intravenous vitamin C) is being investigated in clinical trials as an adjunct to standard-of-care chemoradiation treatments. In vitro, P-AscH- has been shown to sensitize cancer cells to ionizing radiation in a manner that is dependent on the generation of H2O2 while simultaneously protecting normal tissue from radiation damage. There is renewed interest in Auranofin (Au), an FDA-approved medication utilized in the treatment of rheumatoid arthritis, as an anti-cancer agent. Au inhibits the thioredoxin antioxidant system, thus increasing the overall peroxide burden on cancer cells. In support of current literature demonstrating Au's effectiveness in breast, colon, lung, and ovarian cancer, we offer additional data that demonstrate the effectiveness of Au alone and in combination with P-AscH- and ionizing radiation in pancreatic cancer treatment. Combining P-AscH- and Au in the treatment of pancreatic cancer may confer multiple mechanisms to increase H2O2-dependent toxicity amongst cancer cells and provide a promising translatable avenue by which to enhance radiation effectiveness and improve patient outcomes.