When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

Influence of anosognosia on patient-reported outcomes for psychiatric symptoms and quality of life in Huntington's disease.

INTRODUCTION: Anosognosia, defined as reduced awareness of one's deficit or symptom, is common in Huntington's disease (HD) and detectable at each disease stage. The impact of anosognosia on self-reporting in HD populations is critical to understand given growing use of patient-reported outcomes in HD clinical care and research. We aimed to determine the influence of anosognosia on patient-reported outcome measures assessing psychiatric symptoms and quality of life in HD. METHODS: We enrolled HD patients to complete a battery of patient-reported and rater-administered measures, including the Anosognosia Scale, at baseline and 6 months later. Patient-reported outcome measures included NeuroQoL short forms for depression, anxiety, satisfaction with social roles and activities, and positive affect and well-being and Patient-Reported Outcomes Measurement Information System short forms for emotional distress-anger and sleep-related impairment. Anosognosia Scale-Difference Score indexed patient-clinician agreement on patient motor, cognitive, and behavioral abilities. We conducted multivariable linear regression analyses to quantify the association of baseline anosognosia with 6-month patient-reported outcomes. RESULTS: Of 79 patients with complete Anosognosia Scale data at baseline, 25 (31.6 %) met the scale's criterion for anosognosia. In the regression analyses, baseline Difference Score improved prediction of 6-month patient-reported outcomes for depression, anxiety, anger, and positive affect and well-being (χ2(1) value range for likelihood ratio tests contrasting models with and without Difference Score: 13.1-20.9, p-values <0.001). Patients with more anosognosia self-reported less severe psychiatric symptoms and more positive affect and well-being. CONCLUSION: Study results suggest that anosognosia influences patient-reported outcomes for psychiatric symptoms and quality of life in HD populations.

Evaluation of Nursing Coursework for Biased Content.

ABSTRACT: Bias-free content in nursing education prepares students to provide equitable care. The process of assessing content promotes the dismantling of systemic bias in health care, advancing social justice, diversity, equity, and inclusion. Unfortunately, there are no published studies to guide the evaluation of nursing curricula for the presence of bias. This innovative project aimed to identify bias in a course and develop a structure to guide the wider evaluation of the curriculum to identify and remove biased content. A modified version of the Upstate Bias Checklist was applied to a 15-week, three-semester hour, prelicensure, graduate-level nursing course.

Racial Differences in the Presentation and Progression of Huntington's Disease.

BACKGROUND: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that predominantly impacts a Caucasian population, but few efforts have explored racial differences in presentation and progression. OBJECTIVE: The aim was to assess the presentation and progression of HD across race groups using the Enroll-HD longitudinal observational study. METHODS: We applied propensity score matching for cytosine-adenine-guanine age product score, and age, to identify White, Hispanic, Asian, and Black participants from the Enroll-HD database. We compared clinical presentations at baseline, and progression over time, using White participants as a control cohort. RESULTS: Black participants were more severe at baseline across all clinical measures. No significant differences in progression were observed between race groups. CONCLUSIONS: We consider the factors driving clinical differences at baseline for Black participants. Our data emphasize the necessary improvement in underrepresented minority recruitment for studies of rare diseases. © 2023 International Parkinson and Movement Disorder Society.

Overcoming refusal of treatment in pediatric cancer without legal involvement: A descriptive case series from interviews with pediatric oncologists.

To describe strategies that pediatric oncologists utilize to persuade families to initiate or continue chemotherapy after refusing treatment, we examined transcripts from interviews of oncologists with relevant experience. We identified three cases in which the pediatric oncologists' approaches led to voluntary acceptance of recommended treatment without legal intervention. Strategies used include direct communication with alternative medicine providers, time-limited trial of alternative therapy, and praying with the family. While we cannot conclude whether these approaches could be generalized to other cases, they offer ideas for pediatric oncologists to consider when facing the decision to seek judicial involvement or discontinue persuasive efforts.

A 50-year-old refugee woman with a lithopedion and a lifetime of trauma: a case report.

BACKGROUND: Lithopedion is a term that refers to a fetus that has calcified or changed to bone. The calcification may involve the fetus, membranes, placenta, or any combination of these structures. It is an extremely rare complication of pregnancy and can remain asymptomatic or present with gastrointestinal and/or genitourinary symptoms. CASE PRESENTATION: A 50-year-old Congolese refugee with a nine-year history of retained fetus after a fetal demise was resettled to the United States (U.S.). She had chronic symptoms of abdominal pain and discomfort, dyspepsia, and gurgling sensation after eating. She experienced stigmatization from healthcare professionals in Tanzania at the time of the fetal demise and subsequently avoided healthcare interaction whenever possible. Upon arrival to the U.S., evaluation of her abdominal mass included abdominopelvic imaging which confirmed the diagnosis of lithopedion. She was referred to gynecologic oncology for surgical consultation given intermittent bowel obstruction from underlying abdominal mass. However, she declined intervention due to fear of surgery and elected for symptom monitoring. Unfortunately, she passed away due to severe malnutrition in the context of recurrent bowel obstruction due to the lithopedion and continued fear of seeking medical care. CONCLUSION: This case demonstrated a rare medical phenomenon and the impact of medical distrust, poor health awareness, and limited access to healthcare among populations most likely to be affected by a lithopedion. This case highlighted the need for a community care model to bridge the gap between the healthcare team and newly resettled refugees.

Expert Consensus Guidelines for Assessing Students on the Social Determinants of Health.

PHENOMENON: Assessment and evaluation guidelines inform programmatic changes necessary for educational effectiveness. Presently, no widely accepted guidelines exist for educators to assess learners and evaluate programs regarding social determinants of health (SDOH) during physician and physician assistant (PA) education. We sought to garner expert consensus about effective SDOH learner assessment and program evaluation, so as to make recommendations for best practices related to SDOH education. APPROACH: We used a Delphi approach to conduct our study (September 2019 to December 2020). To administer our Delphi survey, we followed a three-step process: 1) literature review, 2) focus groups and semi-structured interviews, 3) question development and refinement. The final survey contained 72 items that addressed SDOH content areas, assessment methods, assessors, assessment integration, and program evaluation. Survey participants included 14 SDOH experts at US medical schools and PA programs. The survey was circulated for three rounds seeking consensus, and when respondents reached consensus on a particular question, that question was removed from subsequent rounds. FINDINGS: The geographically diverse sample of experts reached consensus on many aspects of SDOH assessment and evaluation. The experts selected three important areas to assess learners' knowledge, skills, and attitudes about SDOH. They identified assessment methods that were "essential", "useful, but not essential", and "not necessary." The essential assessment methods are performance rating scales for knowledge and attitudes and skill-based assessments. They favored faculty and patients as assessors, as well as learner self-assessment, over assessments conducted by other health professionals. Questions about separation versus incorporation of SDOH assessment with other educational assessment did not yield consensus opinion. The experts reached consensus on priority outcome measures to evaluate a school's SDOH program which included student attitudes toward SDOH, Competence-Based Assessment Scales, and the percentage of graduates involved in health equity initiatives. INSIGHTS: Based on the Delphi survey results, we make five recommendations that medical and PA educators can apply now when designing learner assessments and evaluating SDOH programming. These recommendations include what should be assessed, using what methods, who should do the assessments, and how they should be incorporated into the curriculum. This expert consensus should guide future development of an assessment and evaluation toolkit to optimize SDOH education and clinical practice.Supplemental data for this article is available online at https://doi.org/10.1080/10401334.2022.2045490 .

The role of ethicists in pediatric hematology/oncology: Current status and future needs.

As pediatric hematology/oncology (PHO) becomes more complex and sub-subspecialized, dedicated PHO ethicists have emerged as sub-subspecialists focused on addressing ethical issues encountered in clinical and research practices. PHO physicians and other clinicians with advanced training in bioethics contribute to the field through ethics research, education, and ethics consultation services. Furthermore, there exists a newer generation of PHO trainees interested in bioethics. This review details the experiences of current PHO ethicists, providing a blueprint for future educational, research and service activities to strengthen the trajectory of the burgeoning sub-subspecialty of PHO ethics. Creating an American Society of Pediatric Hematology/Oncology (ASPHO) ethics Special Interest Group, enhancing clinical ethics education for pediatric hematologists/oncologists (PHOs), developing multi-institutional research collaborations, and increasing attention to ethical issues germane to nonmalignant hematology will serve the interests of the entire field of PHO, enhancing the care of PHO patients and careers of PHOs.

Assessment and Evaluation in Social Determinants of Health Education: a National Survey of US Medical Schools and Physician Assistant Programs.

BACKGROUND: Social determinants of health (SDOH) curricular content in medical schools and physician assistant programs are increasing. However, there is little understanding of current practice in SDOH learner assessment and program evaluation, or what the best practices are. OBJECTIVE: Our study aim was to describe the current landscape of assessment and evaluation at US medical schools and physician assistant programs as a first step in developing best practices in SDOH education. DESIGN: We conducted a national survey of SDOH educators from July to December 2020. The 55-item online survey covered learner assessment methods, program evaluation, faculty training, and barriers to effective assessment and evaluation. Results were analyzed using descriptive statistics. PARTICIPANTS: One hundred six SDOH educators representing 26% of medical schools and 23% of PA programs in the USA completed the survey. KEY RESULTS: Most programs reported using a variety of SDOH learner assessment methods. Faculty and self were the most common assessors of learners' SDOH knowledge, attitudes, and skills. Common barriers to effective learner assessment were lack of agreement on "SDOH competency" and lack of faculty training in assessment. Programs reported using evaluation results to refine curricular content, identify the need for new content, and improve assessment strategies. CONCLUSIONS: We identified a heterogeneity of SDOH assessment and evaluation practices among programs, as well as gaps and barriers in their educational practices. Specific guidance from accrediting bodies and professional organizations and agreement on SDOH competency as well as providing faculty with time, resources, and training will improve assessment and evaluation practice and ensure SDOH education is effective for students, patients, and communities.

Can Peer Assessment Impact Self-efficacy During Small-Group Learning?

INTRODUCTION: While studies report positive correlations between students' perceptions of the learning environment and their reported self-efficacy, the role of peer assessment is poorly understood in this context. This study examines the process and impact of peer assessment on self-efficacy and perceptions of the learning environment during a small-group discussion-based course required of first-year medical students. METHODS: After spending time in small-group learning, students completed three peer assessments and reviewed three assessments of themselves. Analysis of the peer assessments included thematic coding of comments and word counts. Prior to and following the assessment period, students completed a survey including the Generalized Self-efficacy (GSE) Scale, and six locally-developed questions regarding the learning environment and perceptions of peer assessment. We performed paired-sample t tests to determine whether there were differences between the pre- and post-peer assessment surveys. The SUNY Upstate Institutional Review Board reviewed the study and determined it to be exempt. RESULTS: Peer assessment narratives referred most commonly to students' participation style and the need for greater participation. Word counts ranged widely. A paired sample t test indicated that the difference between pre and post peer assessment GSE scores was significant (P=.009), but the effect size was small (d=0.32). Perceptions of the learning environment did not change after the peer assessments. CONCLUSION: Peer assessment offers a potential strategy for enhancing self-efficacy in medical school small-group learning environments and requires few resources to implement, relative to the potential benefits.

Acquiescence is Not Agreement: The Problem of Marginalization in Pediatric Decision Making.

Although parents are the default legal surrogate decision-makers for minor children in the U.S., shared decision making in a pluralistic society is often much more complicated, involving not just parents and pediatricians, but also grandparents, other relatives, and even community or religious elders. Parents may not only choose to involve others in their children's healthcare decisions but choose to defer to another; such deference does not imply agreement with the decision being made and adds complexity when disagreements arise between surrogate decision-makers for minor children and their physicians. I argue that clinicians and ethicists have a duty to consider voices marginalized by hierarchical structures, including but not limited to gender-based inequalities. This approach involves negotiating potential conflicts: between respecting differences of culture and religion, on one hand, and assuring that the wishes of those who are most invested in children's lives are considered, on the other.

A Study of a Cultural Competence and Humility Intervention for Third-Year Medical Students.

OBJECTIVE: This study evaluates the effectiveness of a cultural competence and humility intervention for third-year medical students by assessing changes in clinical evaluation assessments in patient encounters. METHODS: This study examines the effect of a 1-h educational intervention on cultural competence and cultural humility for third-year medical students. Clinical assessments during observed patient encounters are compared in the clerkship before and after the intervention. The intervention adapts a previously studied cultural competence didactic and emphasizes cultural humility practices. Change in scores from the intervention cohort (clinical year 2019-2020) is compared to a pre-intervention cohort (2018-2019). RESULTS: Students who completed the intervention demonstrate greater clinical competency in "relating to patients in a respectful, caring, empathetic manner" as assessed by supervising physicians compared with pre-intervention cohort students (2.7% difference in earning top two scores in subsequent clerkship, P value 0.05, Cramer's V 0.04). Greater clinical competencies were also found in the intervention students compared with pre-intervention students in the domains "demonstrates accountability, contribution and commitment to patient care" and "develops insightful, focused, pertinent questions based on clinical scenarios" (3.8% difference in earning top two scores in subsequent clerkship, P value 0.01 and 5.1% difference, P-value 0.003 with Cramer's V of 0.05 and 0.06, respectively). CONCLUSIONS: Educational interventions to improve cultural competence and cultural humility are important during clinical years to shape future physicians. Our study suggests that brief interventions may improve medical students' clinical competencies. A future study with a more robust intervention is expected to yield more substantial results.

Conscientious Objection to Providing Gender Health Care in Pediatric Training: Balancing the Vulnerability of Transgender Youth and the Vulnerability of Pediatric Residents.

Within pediatric graduate medical education, the care of transgender youth presents opportunities for deepening learners' understanding of equity, access, the role of the physician as an advocate, and health disparities caused by stigma and minority stress. However, when a pediatric resident objects to providing health care to this uniquely vulnerable population owing to their personal beliefs and values, how should pediatrician-educators respond? Important reasons to respect healthcare professionals' conscience have been described in the scholarly literature; however, equally important concerns have also been raised about the extent to which conscientious objection should be permitted in a pluralistic society, particularly given power differentials that favor healthcare professionals and grants them a monopoly over certain services. In the context of medical education, however, residents are in a unique position: they are simultaneously learners and employees, and although privileged relative to their patients, they are also vulnerable in relation to the hierarchy of healthcare and of institutions. We must find a compassionate balance between nurturing the evolving conscience of students and trainees and protecting the health and well-being of our most vulnerable patients. Educators have an obligation to foster empathy, mitigate bias, and mentor their learners, regardless of beliefs, but in some cases, they may recognize that there are limits: patients' welfare ultimately takes precedence and trainees should be guided toward alternative career paths. We explore the limits of conscientious objection in medical training and propose a framework for pediatrician-educators to support learners and patients in challenging circumstances.

"Prix Fixe" or "À La Carte"? Pediatric Decision Making When the Goals of Care Lie in the Zone of Parental Discretion.

For many children with complex medical conditions, decisions regarding their goals of care lie in the zone of parental discretion. That is, clinicians appropriately recognize that in many cases whether to prioritize quantity of life or quality of life is a deeply personal, values-laden decision best made by those who are most deeply invested in the outcome. Once a family has committed to a goal, however, there may be new or ongoing conflict between parents and clinicians regarding the specific interventions provided or not provided in support of that goal. To what extent is it ethically permissible for a seriously ill child's surrogate decision makers to reject individual interventions that support their desired goal of care? This question might be best described thus: is pediatric healthcare "prix fixe," in which clinicians help parents decide the best of one or more set combinations ("menus") of interventions, or is it "à la carte," in which parents are free to accept or reject each individual intervention? We argue that the concept of a "prix fixe" approach should be discussed with families early in the development of the clinical relationship, as an essential facet of shared decision making.

Cryptococcal Meningitis Causing Refractory Hemichorea-Hemiballismus Treated With Pallidotomy.

We report a case of a 31-year-old immunocompetent male who presented with altered mental status and agitation requiring intubation. As sedation was weaned, he demonstrated choreiform movements with associated hemiballismus of the right upper and lower extremities, and he was ultimately diagnosed with cryptococcal meningitis. The patient's chorea did not terminate after the completion of induction antifungal therapy and all pharmacologic options for the management of chorea were ineffective. He underwent a successful unilateral pallidotomy using standard stereotactic methodology targeting the posterior-ventral pallidum, and his choreiform movements dramatically improved post-operatively within 48 hours.

The Last Bastion of Paternalism? A Reflection on Proceduralism, Power, and Privilege.

The two cases presented here may at first seem very different: one patient was an adult, making autonomous decisions for herself and her fetus; the other was a child too young to meaningfully participate in the most significant decisions regarding his health. In both cases, healthcare professionals had to determine the extent to which the parents of a dying fetus or child should be permitted to make agonizing choices about how long to maintain hope and what that death will look like; and in both, health professionals' prognostications influenced their judgments about the patients' best interests and whether they were candidates for certain interventions. While members of both healthcare teams questioned the patients' and families' ability to objectively consider the risks and benefits, the families were focused on the need to be able to live with the decisions made, regardless of outcome. Clinicians expressed unwillingness to perform physical actions they felt were more likely to promote harm and suffering than benefit, and experienced attendant moral distress in the face of conflicting values. In this regard, these cases are mirror images: only in the first case did the clinician, an obstetrician, have sufficient professional authority to refuse to perform the desired intervention. In the second case, the clinicians who expressed the most distress regarding the patient's trajectory were the nurses, who largely lacked similar autonomy. Viewed together, these cases share a core question: What does paternalism look like in the contemporary era?

"The stakes could not be higher": A mixed methods study of parental social media use in pediatric oncology.

BACKGROUND: To describe how parents and families of children with cancer evaluate the benefits and risks of using social media (SM) and how they navigate disagreements between oncologists' advice and information found on SM. PROCEDURE: Parents of children who had been previously diagnosed with cancer, and who had used SM for a purpose related to that child's health were recruited through SM sites and nonprofit organizations across the United States and were invited to complete questionnaires about their experiences using SM; a subset of participants also completed a follow-up in-depth interview. Open-ended responses and interviews were analyzed using thematic analysis. RESULTS: Ninety parents completed written questionnaires; 21 completed follow-up interviews. Seventy percent reported experiencing a situation in which information shared on SM conflicted with information provided by their child's oncologist. Although 86% reported that they discussed the conflicting information with the oncologist and 70% described the oncologist's response as positive, 78% also described ongoing negative feelings about the experience. Parents described openness to discussing SM, honesty, transparency, and humility regarding the limits of medicine, and shared decision-making regarding information found on SM as increasing their trust in their oncologist. CONCLUSIONS: Parents offered valuable insights regarding their experiences navigating SM, including eight recommendations for how pediatricians might approach discussing parental SM use. Future studies will evaluate the utility of these recommendations for pediatric clinicians.

Social Media in the Pediatric Hematology/Oncology Clinical Space.

Parents and families of children with cancer and blood disorders increasingly turn to social media to connect with families facing similar challenges. These multidirectional interactions on social media are not only sources of psychosocial support but frequently sources of medical information. Consequently, such interactions have the potential to meaningfully impact the relationships between parents, children, and pediatric hematology/oncology providers. The 3 case studies analyzed here illustrate the spectrum of ethical and communication issues that arise when families' use of social media enters the pediatric clinical space, including questions related to trust and mistrust, misinformation, patient privacy and confidentiality, and allocation of resources, including time. Ideal approaches to resolving dilemmas related to parental social media use are those that maintain respect, build trust, and acknowledge the changing culture. Social media use is now the norm. Promoting transparent discussions of its use between families and health professionals is, therefore, the key to optimizing health outcomes for children whose parents turn to social media. Mutual respect, collaboration, and long-term relationships are also potential antidotes to the spread of misinformation and mistrust through social media.