Armand H. Matheny Antommaria’s research while affiliated with University of Cincinnati and other places

OBJECTIVE Summarize the quality of the evidence and the strength of recommendations in the American Academy of Pediatrics’ (AAP) current clinical practice guidelines. METHODS We identified the AAP’s current clinical practice guidelines from its website. Three independent reviewers abstracted each recommendation, the quality of evidence supporting it, and its strength from every guideline. We resolved discrepancies by consensus and analyzed results using descriptive statistics. RESULTS We identified 14 current clinical practice guidelines. Individual guidelines make between 1 and 39 recommendations (mean 16.9, median 15), and the guidelines make a total of 236 recommendations. Twenty-five (10.6%) recommendations are based on Level A evidence (well-designed and -conducted trials, meta-analyses), 112 (47.5%) Level B (trials with minor limitations; consistent findings from multiple observational studies), 64 (27.1%) Level C (single or few observational studies or multiples studies with inconsistent findings or major limitations), 15 (6.4%) Level D (expert opinion, case reports, reasoning from first principles), and 20 (8.5%) Level X (exceptional situations in which validating studies cannot be performed and there is a clear preponderance of benefit or harm). Eighty-two (34.7%) recommendations are Strong, 117 (49.6%) Moderate, and 37 (15.7%) Weak. Fifty of the 117 (42.7%) Moderate Recommendations are based on Level C evidence, and 10 of the 80 (13%) Strong Recommendations are based on Level X evidence. CONCLUSION A minority of recommendations in the AAP’s current clinical practice guidelines (10.6%) are based on the highest-quality evidence. Additional research is needed to improve the quality of evidence supporting pediatric clinical practice guidelines.

17β-hydroxysteroid dehydrogenase type 3 deficiency is a 46,XY difference of sex development (DSD) that may present in childhood with inguinal testes or at puberty following virilization. We present four individuals, assigned female at birth, to highlight complexities and considerations surrounding orchiectomy. We reviewed the literature and created a “FACT sheet” to guide shared decision-making for patients, parents, and providers. “Ruth” presented at 16 months with inguinal herniae and underwent orchiectomy, based on parental preference. “Erica” presented at 13 years with voice deepening; she and her parents chose pubertal suppression and eventual orchiectomy. “Riley” presented at 18 months with inguinal herniae; after pubertal suppression and estrogen replacement, orchiectomy at age 13 years revealed germ cell neoplasia in situ. “Jordan” presented at birth with atypical genitalia and inguinal testes. Initially assigned female at birth, “Jordan's” sex was reassigned to male at 15 months; he subsequently underwent orchidopexy and expressed female gender identity at age 12 years. While early orchiectomy may eliminate pubertal androgens discordant with a female gender identity and remove malignancy risk, it necessitates pubertal induction and limits patient participation in decision-making. Fertility potential is unlikely; current fertility preservation protocols remain experimental for individuals with DSD. The stability of gender identity in this condition is difficult to predict. Postponing decision-making around testicular management allows the individual to meaningfully participate in the process and, if desired, undergo masculinizing puberty. Shared decision-making regarding testicular management requires consideration of predictions for gender identity stability, hormone replacement, testicular malignancy risk, and fertility potential.

We present the case of a child born with hypoplastic left heart syndrome. After developing multiple complications following the first surgical stage (Norwood procedure), her parents decide not to proceed with the second stage (Glenn operation). Cardiac surgeons, pediatric intensivists, a psychologist, and a bioethicist analyze whether further surgical intervention is ethically obligatory. A cardiac surgeon believes that after getting beyond the difficulties of the first stage, the patient seems to be a reasonable candidate for the next procedure. He considers the intervention to be ethically permissible edging on ethically obligatory. The psychologist describes the emotional impact of traumatic experiences like the one experienced by this family. She analyses whether their decision is likely to be aligned with their values and explains the possible mechanisms that justify a decision not to continue with surgery. Physicians, a surgeon, and a bioethicist analyze the parents’ perception of excessive suffering based on severe complications that were far worse than expected. They believe that, even if proceding with the Glenn operation is in the child’s best interest, state intervention to require the surgery over the parents’ objection is not justified.

Despite apparent disagreement in the scholarly literature on standards of pediatric decision making, a recognition that similar norms underpin many of the dominant frameworks motivated a June 2022 symposium "Best Interests and Beyond: Standards of Decision Making in Pediatrics" in St Louis, MO. Over the course of this 3-day symposium, 17 expert scholars (see author list) deliberated on the question "In the context of US pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" The symposium and subsequent discussion generated 6 consensus recommendations for pediatric decision making, constructed with the primary goals of accessibility, teachability, and feasibility for practicing clinicians, parents, and legal guardians. In this article, we summarize these recommendations, including their justification, limitations, and remaining concerns.

Billions of people use social media, including many patients, families, and providers. As social media has evolved, so have the challenges users face when choosing to share or view content. These challenges are even more complex when providers care for patients and families who post publicly about their experience in the medical system, especially when they have many followers. In this Ethics Rounds, we present a case of a resident physician caring for a medically complex child whose parent has hundreds of thousands of followers on her social media accounts where she posts details of her child's medical experience. The resident is considering viewing the parent's posts. An ethicist, a family advocate, and a pediatric resident provide commentaries. The first discusses issues of privacy, influencer culture, and decision-making. The second addresses communication and the difficulties families face as they interact with the medical system. The third discusses outdated policies and risks to the therapeutic relationship. The commentators generally agree that it is preferable for providers to discuss their concerns with patients or parents/guardians directly rather than view their social media surreptitiously. Although there may be some benefits to viewing someone's posts, such as gaining a better understanding of their life at home, it would be best for the provider to view them with the patient/parent to allow them to provide context.

This Ethics Rounds presents a request for directed blood donation. Two parents feel helpless in the setting of their daughter's new leukemia diagnosis and want to directly help their child by providing their own blood for a transfusion. They express hesitancy about trusting the safety of a stranger's blood. Commentators assess this case in the setting of blood as a scarce community resource during a national blood shortage. Commentators review the child's best interest, future risks, and harm-benefit considerations. Commentators recognize the professional integrity, humility, and courage of the physician to admit his own lack of knowledge on the subject and to seek help rather than claim directed donation is not possible without further investigation into options. Shared ideals such as altruism, trust, equity, volunteerism, and solidarity are recognized as values relevant to sustainment of a community blood supply. Pediatric hematologists, a blood bank director, transfusion medicine specialists, and an ethicist conclude that directed donation is only justified by lower risks to the recipient in particular circumstances.

Objectives: To report the prevalence of adverse events in children undergoing apnea testing as part of the determination of death by neurologic criteria (DNC). Design: Single-center, retrospective study. Setting: Academic children's hospital that is a Level I Trauma Center. Patients: All children who underwent apnea testing to determine DNC from July 2013 to June 2020. Interventions: None. Measurements and main results: We abstracted the medical history, blood gases, ventilator settings, blood pressures, vasoactive infusions, intracranial pressures, chest radiographs, and echocardiograms for all apnea tests as well as any ancillary test. Adverse events were defined as hypotension, hypoxia, pneumothorax, arrhythmia, intracranial hypertension, and cardiac arrest. Fifty-eight patients had 105 apnea tests. Adverse events occurred in 21 of 105 apnea tests (20%), the most common being hypotension (15/105 [14%]) and hypoxia (4/105 [4%]). Five of 21 apnea tests (24%) with adverse events were terminated prematurely (three for hypoxia, one for hypotension, and one for both hypoxia and hypotension) but the patients did not require persistent escalation in care. In the other 16 of 21 apnea tests (76%) with adverse events, clinical changes were transient and managed by titrating vasoactive infusions or completing the apnea test. Conclusions: In our center, 20% of all apnea tests were associated with adverse events. Only 5% of all apnea tests required premature termination and the remaining 15% were completed and the adverse events resolved with medical care.

When incentives are offered to parents and their children to partake in research, there are concerns that parents may be unduly influenced by the incentives, and the children may be exploited. We present a case from a low- and middle-income country and consider the ethical issues that arise when the children are asked to participate in a multinational, double-blind, randomized, placebo-controlled trial of the effects of a nutritional supplement on growth. The first commenter, from Malaysia, notes that their residents might not share Americans' expectations regarding children's role in the consent process from a cultural perspective, which may alter the analysis of the concerns. The authors of the second commentary emphasize the use of incentives that benefit the child participant rather than their parent or are provided directly to the child participant to address the concerns. The third commentator discusses the importance of minimizing the study's risks and balancing the benefits and the risks, which attenuates the concerns.

Objectives To characterize the prevalence and content of pediatric triage policies. Methods We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators. Results Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children’s hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) institutions shared their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions. Conclusions While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities.