Ethical Issues Concerning Disclosures of HIV Diagnoses to Perinatally Infected Children and Adolescents

Healthcare workers (HCWs) often disagree with caregivers or parents about whether, when, and how to disclose HIV serostatus to perinatally HIV-infected children, yet the critical ethical, moral, and legal issues involved and their interplay have been underexplored. The purpose of this article is to bring attention to this increasingly important issue and the complexities involved, and to provide a framework for considering disclosure-related challenges

Utilization of Psychotherapeutic Interventions by Pediatric Psychosocial Providers

One of the Standards of Psychosocial Care for Children with Cancer and their Families recommends that all youth with cancer and their family members have access to psychotherapeutic interventions and support throughout the cancer trajectory. This study was created to identify the psychosocial interventions and services provided to children with cancer and their family members, to ascertain whether there are differences in interventions provided by age of the patient and stage of treatment, and to learn about barriers to psychosocial service provision. An online survey was disseminated to psychosocial providers through the listservs of national and international professional organizations. The majority of the 242 respondents were either psychologists (39.3%) or social workers (26.9%) and 79.7% worked in the United States. The intervention offered most often to pediatric patients, caregivers, and siblings, at every stage of treatment, was psychoeducation (41.7–48.8%). Evidence-based interventions, including cognitive behavioral therapy (56.6%) and mindfulness-based interventions (57.9%) were reported to be frequently used with patients. Interventions designed specifically for the pediatric oncology population were not commonly endorsed. Psychosocial providers reported quality of care would be improved by additional staff, better communication/ collaboration with medical team members and increased community-based resources. Future research should focus on improving accessibility to population-specific evidenced-based interventions and translating science to practice

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000–2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting

Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease

This Special Issue of the journal constitutes an opportune moment to reflect on the psychosocial needs of children living with rare diseases and of their families [...]

Pursuing Periodic Review of Agency Regulation

As regulators consider new rules and potential revisions to past rules, they should learn from experience, both to improve regulation and to enhance the accuracy of policy analyses. Retrospective review is one tool for such learning. But despite longstanding calls for retrospective review of regulations—that is, for their evaluation after being in force—the results of such reviews have been episodic and limited. One potential way to make retrospective review more consistent and systematic, and to cultivate more iterative updating through continuous performance evaluation, may be to make these reviews periodic. Rather than a single look-back retrospective review, a process of periodic review would involve repeated evaluations on a scheduled frequency, such as every five or ten years. The Administrative Conference of the United States (ACUS) has recommended such periodic review since at least 1995. In addition, some executive orders and statutes even call on agencies to undertake periodic reviews. But there has been little study of how often periodic review is employed, how well it performs, and whether it should be undertaken more widely. In a recent report on Periodic Review of Agency Regulation for ACUS, we investigated which executive orders and statutes call for periodic reviews; how agencies undertake periodic reviews; and their incentives, barriers, and facilitators. We sought to inform best practices for agencies to employ periodic reviews to improve regulation and regulatory impact analysis. We assembled a database of periodic review efforts across U.S. federal agencies and used that database to select a representative sample for more detailed study. For each review in our sample, we collected documentary evidence, and we conducted interviews of knowledgeable staff at several agencies, including the U.S. Environmental Protection Agency (EPA), the U.S. Department of Agriculture (USDA), the U.S. Department of Transportation (DOT), the Occupational Safety and Health Administration (OSHA), and the Office of Information and Regulatory Affairs (OIRA). We found at least 20 statutes calling for reviews to be conducted “every X years,” such as every four, five, eight, or ten years, and an additional 20 or more statutes calling for reviews to be conducted “periodically” or “from time to time.” These 40 or more statutes include the Clean Air Act, the Endangered Species Act, the law on National Dietary Guidelines, and the Telecommunications Act of 1996. In addition, several executive orders have called on agencies to “periodically review” their existing regulations, including executive order 12044 (1978), executive order 12866 (1993), and executive order 13563 (2011). And some agencies have adopted policies to guide their own rulemaking, with periodic review processes required in some cases. Our preliminary findings suggest that although periodic reviews are widely required, they are inconsistently implemented. Some of this inconsistency may stem from ambiguity in the requirements. Some may reflect lack of agency staffing or expertise, and the opportunity costs of periodic review, as agencies face resource constraints and obligations to do other activities or inhibitions to critique their own past work. Agencies may also be persuaded to delay periodic reviews out of concern for possible costs of policy instability to affected parties. Our interviews suggested that agencies are more likely to conduct periodic reviews when specifically required by statute, when the time interval is clear (“every X years”) rather than ambiguous (“periodically”), and when the agency adapts the periodic review process to cultivate a culture of ongoing evaluation and updating. EPA’s five-year reviews of the National Ambient Air Quality Standards (NAAQS) and the USDA’s and U.S. Department of Health and Human Services’ reviews of the Dietary Guidelines for Americans were among the periodic review programs that have been integrated most successfully into agency culture and process. Notably, the periodic reviews of both of these programs benefit from expert advisory committees. The net benefits of periodic reviews are likely to be greater when the evidentiary basis for the regulation is evolving rapidly—such as with changing science, technology, or social conditions. The benefits are likely to be smaller, however, where the opportunity costs of repeated reviews—to the agency and to society—are high. The usefulness of periodic reviews is improved when the reviews are shared widely across government and with the public. The optimal frequency of periodic review remains an understudied variable. Where the frequency of periodic review is set by law at “every X years,” these required periods typically lack stated reasons or explanations for why this time period was chosen over alternative time periods. Congress should assess these timelines when it sets periodic time intervals. The U.S. Office of Management and Budget (OMB) and agencies should assess the optimal frequency of periodic reviews when they have the discretion to set their own time intervals or schedules, and develop recommendations for executive orders, statutes, and agency policies to optimize these frequencies. A new executive order that updates and expands on section five of executive order 12,866, or a new version of OMB Circular A-4, could go beyond calls for reviews to be conducted “periodically” or “from time to time.” Instead, they could identify normative criteria for OMB and agencies to use to select specific time periods in each policy area. In principle, the optimal frequency for reviews should vary in direct proportion to the expected rate of change and the associated gains from learning about policy performance and about impact assessment methods. The optimal frequency should vary in inverse proportion to the expected opportunity costs of repeated reviews—including to the agency and to society. These considerations are likely to vary by issue area, so that the optimal frequency of periodic reviews may also vary. Our report helped inform ACUS’s adoption of Recommendation 2021-2 (published in the Federal Register on July 8, 2021). It should be noted that neither ACUS Recommendation 2021-2 nor our report argue that periodic review is warranted in all cases. We expressly recognize that periodic review may pose costs, both to the agency and to society. And we also recognize that periodic review will be more valuable—and its optimal time interval will be shorter—when the gains from learning are higher because the relevant circumstances are changing quickly from the conditions and knowledge that prevailed at the time of the initial impact assessment and issuance of the rule. Moreover, the report emphasizes that the agencies that have made periodic reviews work best have developed data sources and staffing models that enable ongoing monitoring, learning, and updating as a continuous process—rather than a last-minute dash to produce a report by the due date. For these reasons, we recommend that periodic review be invoked and applied selectively, in situations where its net benefits will be greatest and where practical organizational approaches will make periodic review a help, not a hindrance, to the process of agency policy-making. One of the newest statutes discussed in our report, the Foundations for Evidence-Based Policymaking Act of 2018 offers the potential, if well implemented, for periodic evaluations and “learning agendas” across many agencies of the government. The latest guidance issued by OMB in June 2021 on implementing this Act “reaffirms and expands on previous OMB guidance on Learning Agendas and Annual Evaluation Plans” issued in 2019 and 2020, and it urges agencies to recognize that “success requires that agencies develop processes and practices that establish habitual and routine reliance on evidence across agency functions and demand new or better evidence when it is needed.” Our report on periodic review, along with the associated ACUS Recommendation 2021-2, could help inform the design of agency learning agendas and evaluation plans. Ideally, periodic reviews will become part of an ongoing process of learning and adaptive regulation at regulatory agencies

Reflections of Moral Suffering, Resilience, and Wisdom of Pediatric Oncology Social Workers during the COVID-19 Pandemic

Background: The COVID-19 pandemic has significantly altered the lives of pediatric oncology social workers. Challenges include difficulty building rapport with the use of telephone/computers, lack of clarity around who is designated as “essential”, structural challenges, isolation, and witnessing distress. This study aimed to describe the ways that the pandemic has personally impacted pediatric oncology social workers. Methods: Participants were recruited through the Association of Pediatric Oncology Social Workers (APOSW) listserv. In total, 101 participants from 31 states and the District of Columbia completed an online survey containing quantitative and open-ended questions. Qualitative data analysis included thematic analysis of participants’ optional survey responses to three open-ended questions. Results: Fifty-seven of the participants provided responses that revealed 3 first level codes and 11 second level codes. First level codes were developed a priori from the questions: Experiences that stay with you, Wisdom gained and Impact on your work. Pandemic-related challenges caused moral suffering and professional challenges for participants but also created opportunities to find meaning in their work. Conclusion: Data illuminated moral suffering, unrecognized resilience, new ways of maintaining self-and family care, and creative approaches to care of children with cancer and their families at diagnosis, during treatments and at the end of life

Triggers for Palliative Care Referral in Pediatric Oncology

Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and PC remains underutilized. We conducted a retrospective chart review of pediatric oncology patients treated at an academic institution between January 2015 to November 2018. Data collected included demographics, disease and therapy characteristics, and consultation notes, specifically documenting existence of predetermined “high yield triggers” for PC consultation. Among 931 eligible patients the prevalence of PC consultation was 5.6% while approximately 94% of patients had at least 1 trigger for PC consultation. The triggers that more often resulted in PC consultation included: symptom management needs (98%; n = 51) high-risk disease (86%; n = 45), poor prognosis (83%; n = 43), multiple lines of therapy (79%; n = 41) and a documented ICU admission (67%; n = 35). Our findings suggest that the high yield triggers for palliative care consultation that pediatric oncologists identify as important are not translating into practice; incorporating these triggers into a screening tool may be the next step to improve early PC integration

Utilization of Psychotherapeutic Interventions by Pediatric Psychosocial Providers

One of the Standards of Psychosocial Care for Children with Cancer and their Families recommends that all youth with cancer and their family members have access to psychotherapeutic interventions and support throughout the cancer trajectory. This study was created to identify the psychosocial interventions and services provided to children with cancer and their family members, to ascertain whether there are differences in interventions provided by age of the patient and stage of treatment, and to learn about barriers to psychosocial service provision. An online survey was disseminated to psychosocial providers through the listservs of national and international professional organizations. The majority of the 242 respondents were either psychologists (39.3%) or social workers (26.9%) and 79.7% worked in the United States. The intervention offered most often to pediatric patients, caregivers, and siblings, at every stage of treatment, was psychoeducation (41.7–48.8%). Evidence-based interventions, including cognitive behavioral therapy (56.6%) and mindfulness-based interventions (57.9%) were reported to be frequently used with patients. Interventions designed specifically for the pediatric oncology population were not commonly endorsed. Psychosocial providers reported quality of care would be improved by additional staff, better communication/collaboration with medical team members and increased community-based resources. Future research should focus on improving accessibility to population-specific evidenced-based interventions and translating science to practice

Healthcare Professionals' Preferences and Perceived Barriers for Routine Assessment of Patient-Reported Outcomes in Pediatric Oncology Practice: Moving Toward International Processes of Change

Using patient-reported outcomes (PROs) in clinical practice has been shown to enhance detection of health-related quality of life problems and satisfaction with care in children with cancer. This study seeks to identify which PRO information healthcare professionals (HCPs) find useful and what the perceived barriers for routinely assessing PROs are. A total of 352 pediatric HCPs (43% male) from 52 countries completed a semistructured online 28-item questionnaire. Descriptive statistics (percentages) were used to identify highly important PRO information and perceived barriers. HCPs' perceived barriers were compared according to gender, years of work experience, and country using a Fishers exact test. The five highest ranked PRO topics relevant in routine assessment by HCPs were as follows: pain (98%), feeling sad or depressed (96%), overall physical symptoms (95%), problems with therapy adherence (94%), and overall emotional issues (93%). Five lowest ranked topics were as follows: difficulties praying (50%), other spiritual concerns (55, 56, and 60%), and feeling bored (60%). Barriers for assessing PROs included: time (58%), insufficient staff (49%), logistics (32%), and financial resources (26%). Providers from developing countries more often reported barriers concerning insufficient staff, logistics, and financial resources. HCPs strongly value the use of physical and psychosocial PROs within pediatric oncology practice, but mainly perceive organizational barriers for routine assessment. To successfully integrate PROs, efforts should be made to address HCP-perceived barriers, such that patient-reported problems can be detected and timely referrals mad