Search

BACKGROUND AND OBJECTIVES: Hospitalized infants, children, and adolescents are typically exposed to numerous distinct medications during inpatient admissions, increasing their risk of potential drug−drug interactions (PDDIs). We assessed the prevalence and characteristics of PDDI exposure of pediatric patients treated in children’s hospitals. METHODS: This retrospective cohort study included patients RESULTS: Of 498 956 hospitalizations in 2011, 49% were associated with ≥1 PDDI, with a “contraindicated” PDDI occurring in 5% of all hospitalizations, a “major” PDDI present in 41%, a “moderate” PDDI in 28%, and a “minor” PDDI in 11%. Opioids were involved in 25% of all PDDIs, followed by antiinfective agents (17%), neurologic agents (15%), gastrointestinal agents (13%), and cardiovascular agents (13%). One-half of all PDDI exposures were due to specific drug pairs occurring in ≤3% of patients per hospital day. The most common potential adverse drug events included additive respiratory depression (in 21% of PDDIs), bleeding risk (5%), QT interval prolongation (4%), reduced iron absorption/availability (4%), central nervous system depression (4%), hyperkalemia (3%), and altered diuretic effectiveness (3%). CONCLUSIONS: Exposure to PDDIs is common among hospitalized children. Empirical data are needed to determine the probability and magnitude of the actual harm for each specific PDDI, particularly for less common drug pairs.

The US Food and Drug Administration's December 2016 approval of nusinersen for the treatment of patients with all subtypes of spinal muscular atrophy ushered in a new era for patients with spinal muscular atrophy, their families, and all those involved in their care. The extreme cost of the medication and the complicated logistical requirements for administering nusinersen via lumbar puncture have created practical challenges that raise important ethical considerations. We discuss 6 challenges faced at the institutional level in the United States: cost, limited evidence, informed consent, treatment allocation, fair distribution of responsibilities, and transparency with stakeholders. These challenges must be understood to ensure that patients with spinal muscular atrophy benefit from treatment, are protected from harm, and are treated fairly.

OBJECTIVES: The ethics of maternal-fetal surgery involves weighing the importance of potential benefits, risks, and other consequences involving the pregnant woman, fetus, and other family members. We assessed clinicians’ ratings of the importance of 9 considerations relevant to maternal-fetal surgery. METHODS: This study was a discrete choice experiment contained within a 2015 national mail-based survey of 1200 neonatologists, pediatric surgeons, and maternal-fetal medicine physicians, with latent class analysis subsequently used to identify groups of physicians with similar ratings. RESULTS: Of 1176 eligible participants, 660 (56%) completed the discrete choice experiment. The highest-ranked consideration was of neonatal benefits, which was followed by consideration of the risk of maternal complications. By using latent class analysis, we identified 4 attitudinal groups with similar patterns of prioritization: “fetocentric” (n = 232), risk-sensitive (n = 197), maternal autonomy (n = 167), and family impact and social support (n = 64). Neonatologists were more likely to be in the fetocentric group, whereas surgeons were more likely to be in the risk-sensitive group, and maternal-fetal medicine physicians made up the largest percentage of the family impact and social support group. CONCLUSIONS: Physicians vary in how they weigh the importance of social and ethical considerations regarding maternal-fetal surgery. Understanding these differences may help prevent or mitigate disagreements or tensions that may arise in the management of these patients.

Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. The objectives of this study were to describe fatigue as prospectively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress.Children (age ≥2 years) with advanced cancer (N = 104) or their parents at 3 academic hospitals reported symptoms at most weekly over 9 months using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system. PediQUEST administered a modified version of the Memorial Symptom Assessment Scale (PQ-MSAS) as part of a randomized controlled trial. Clinical information was abstracted from medical records. Primary outcomes were: 1) fatigue prevalence (yes/no response to PQ-MSAS fatigue item) and 2) fatigue distress (composite score of severity, frequency, and bother). Multivariable models were constructed to identify factors independently associated with fatigue prevalence and scores reflecting fatigue distress (ie, burden).Of 920 reports, 46% (n = 425) noted fatigue. When reported, fatigue was of high frequency in 41% of respondents (n = 174), severity in 25%of respondents (n = 107), and bother in 34%of respondents (n = 143). Most reports (84%; n = 358) were associated with scores indicating fatigue distress. In multivariable analyses, fatigue was associated with older age, lower hemoglobin, and distress from particular symptoms (anorexia, nausea, sleep disturbance, sadness, and irritability). In contrast, fatigue distress was associated with distress from nausea, cough, and pain.Fatigue is common among children with advanced cancer and is often highly distressing. Interventions focused on uncontrolled symptoms may ease fatigue distress in children with advanced cancer.

A 20-week-old fetus was diagnosed with critical pulmonary valve stenosis. Given the ultrasound findings, the outcome was difficult to predict. The fetal cardiologists discussed the possibility of a pulmonary valvuloplasty (an experimental procedure) with the parents, wherein the fetal right ventricle would be punctured with a long 18G needle, and through it, a wire advanced across the pulmonary valve, allowing for balloon dilation of the valve. The experimental procedure had been performed at a handful of centers. There were some reports of success. The parents sought an opinion at one of the referral centers that had tried the procedure. The doctors there recommended against it. The doctors at the original center were unsure whether they should try the procedure. The parents wanted it. In this ethics rounds, doctors and the parents discuss the arguments for and against a high-risk, innovative in utero procedure.

Importance Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values. Observations To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient’s best interest. Conclusions and Relevance It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.

CONTEXT: Parents may experience psychological distress when a child is acutely hospitalized, which can negatively affect child outcomes. Interventions designed to support parents’ coping have the potential to mitigate this distress. OBJECTIVE: To describe interventions designed to provide coping support to parents of hospitalized children and conduct a meta-analysis of coping support intervention outcomes (parent anxiety, depression, and stress). DATA SOURCES: We searched Pubmed, Embase, PsycINFO, Psychiatry Online, and Cumulative Index to Nursing and Allied Health Literature from 1985 to 2016 for English-language articles including the concepts “pediatric,” “hospitalization,” “parents,” and “coping support intervention.” STUDY SELECTION: Two authors reviewed titles and abstracts to identify studies meeting inclusion criteria and reviewed full text if a determination was not possible using the title and abstract. References of studies meeting inclusion criteria were reviewed to identify additional articles for inclusion. DATA EXTRACTION: Two authors abstracted data and assessed risk of bias by using a structured instrument. RESULTS: Initial searches yielded 3450 abstracts for possible inclusion. Thirty-two studies met criteria for inclusion in the systematic review and 12 studies met criteria for inclusion in the meta-analysis. The most commonly measured outcomes were parent depression, anxiety, and stress symptoms. In meta-analysis, combined intervention effects significantly reduced parent anxiety and stress but not depression. Heterogeneity among included studies was high. LIMITATIONS: Most included studies were conducted at single centers with small sample sizes. CONCLUSIONS: Coping support interventions can alleviate parents’ psychological distress during children’s hospitalization. More evidence is needed to determine if such interventions benefit children.

BACKGROUND: Food insecurity (FI) remains a major public health problem. With the rise in suburban poverty, a greater understanding of parents’ experiences of FI in suburban settings is needed to effectively screen and address FI in suburban practices. METHODS: We conducted 23 semistructured interviews with parents of children RESULTS: Of the 23 parents interviewed, all were women, with 39% white and 39% African American. Three primary themes emerged: Parents expressed initial surprise at screening followed by comfort discussing their unmet food needs; parents experience shame, frustration, and helplessness regarding FI, but discussing FI with their clinician helped alleviate these feelings; parents suggested practices could help them more directly access food resources, which, depending on income, may not be available to them through government programs. CONCLUSIONS: Although most parents were comfortable discussing FI, they felt it was important for clinicians to acknowledge their frustrations with FI and facilitate access to a range of food resources.

BACKGROUND: National organizations recommend pediatricians screen for food insecurity (FI). Although there has been growing research in urban practices, little research has addressed FI screening in suburban practices. We evaluated the feasibility, acceptability, and impact of screening in suburban practices. METHODS: We conducted a mixed methods study that implemented FI screening in 6 suburban pediatric primary care practices. We included all children presenting for either a 2-, 15-, or 36-month well-child visit (N = 5645). Families who screened positive were eligible to be referred to our community partner that worked to connect families to the Supplemental Nutrition Assistance Program. We conducted focus groups with clinicians to determine their perceptions of screening and suggestions for improvement. RESULTS: Of the 5645 children eligible, 4371 (77.4%) were screened, of which 122 (2.8%) screened positive for FI (range: 0.9%–5.9% across practices). Of the 122 food-insecure families, only 1 received new Supplemental Nutrition Assistance Program benefits. In focus groups, 3 themes emerged: (1) Time and workflow were not barriers to screening, but concerns about embarrassing families and being unable to provide adequate resources were; (2) Clinicians reported that parents felt the screening showed caring, which reinforced clinicians’ continued screening; (3) Clinicians suggested implementing screening before the visit. CONCLUSIONS: We found it is feasible and acceptable for clinicians to screen for FI in suburban practices, but the referral method used in this study was ineffective in assisting families in obtaining benefits. Better approaches to connect families to local resources may be needed to maximize the effectiveness of screening in suburban settings.

BACKGROUND: Children with multiple chronic conditions (CMCC) are increasingly using hospital care. We assessed how much of US pediatric inpatient care is used by CMCC and which chronic conditions are the key drivers of hospital use. METHODS: A retrospective analysis of all 2.3 million US acute-care hospital discharges in 2012 for children age 0 to 18 years in the Kids’ Inpatient Database. The ∼4.5 million US hospitalizations for pregnancy, childbirth, and newborn and neonatal care were not assessed. We adapted the Agency for Healthcare Research and Quality’s Chronic Condition Indicators to classify hospitalizations for children with no, 1, or multiple chronic conditions, and to determine which specific chronic conditions of CMCC are associated with high hospital resource use. RESULTS: Of all pediatric acute-care hospitalizations, 34.3% were of children with no chronic conditions, 36.5% were of those with 1 condition, and 29.3% were of CMCC. Of the $23.6 billion in total hospital costs, 19.7%, 27.4%, and 53.9% were for children with 0, 1, and multiple conditions, respectively, and similar proportions were observed for hospital days. The three populations accounted for the most hospital days were as follows: children with no chronic condition (20.9%), children with a mental health condition and at least 1 additional chronic condition (20.2%), and children with a mental health condition without an additional chronic condition (13.3%). The most common mental health conditions were substance abuse disorders and depression. CONCLUSIONS: CMCC accounted for over one-fourth of acute-care hospitalizations and one-half of all hospital dollars for US pediatric care in 2012. Substantial CMCC hospital resource use involves children with mental health–related conditions.

With the growing recognition over the past 2 decades regarding the harm caused by school bullying on a child’s physical and emotional health, a variety of measures to reduce bullying has been put in place. Given all these efforts, is school bullying trending upward (as many might fear) or downward (as we hope)? What are the current rates of bullying? And, beyond a singular focus on the occurrence of bullying episodes, is the climate in schools improving? The large-sample, 10-year longitudinal study of school bullying by Waasdorp et al1 in this issue of Pediatrics addresses these questions, and does so with commendable rigor. For instance, they used a standard definition of bullying, specifying the attributes of intention, repetition, and power imbalance; the use of this standard definition is not always routine in studies of bullying, making comparisons across studies usually problematic. They also examined a broader age range of students than in other research, improving the generalizability of the findings. Finally, they used a sophisticated longitudinal design that takes into account a number of covariates to better understand trends in bullying and related behaviors over this 10-year period. The good news from the Waasdorp et al … Address correspondence to Stephen S. Leff, PhD, Violence Prevention Initiative, Department of Pediatrics, The Children’s Hospital of Philadelphia, Roberts Center for Pediatric Research, 2716 South St, Floor 8, #8323, Philadelphia, PA 19104. E-mail: leff{at}email.chop.edu

Background While prenatal surgery historically was performed exclusively for lethal conditions, today intrauterine surgery is also performed to decrease postnatal disabilities for non-lethal conditions. We sought to describe physicians’ attitudes about prenatal surgery for lethal and non-lethal conditions and to elucidate characteristics associated with these attitudes. Methods Survey of 1200 paediatric surgeons, neonatologists and maternal–fetal medicine specialists (MFMs). Results Of 1176 eligible physicians, 670 (57%) responded (range by specialty, 54%–60%). In the setting of a lethal condition for which prenatal surgery would likely result in the child surviving with a severe disability, most respondents either disagreed (59%) or strongly disagreed (19%) that they would recommend the surgery. Male physicians were twice as likely to recommend surgery for the lethal condition, as were physicians who believe that abortion is morally wrong (OR 1.75; 95% CI 1.0 to 3.05). Older physicians were less likely to recommend surgery (OR 0.57; 95% CI 0.36 to 0.88). For non-lethal conditions, most respondents agreed (66% somewhat, 4% strongly) that they would recommend prenatal surgery, even if the surgery increases the risk of prematurity or fetal death. Compared with MFMs, surgeons were less likely to recommend such surgery, as were physicians not affiliated with a fetal centre, and physicians who were religious (ORs range from 0.45 to 0.64). Conclusion Physician’s attitudes about prenatal surgery relate to physicians’ beliefs about disability as well as demographic, cultural and religious characteristics. Given the variety of views, parents are likely to receive different recommendations from their doctors about the preferable treatment choice.

The primary objective of this study was to examine the associations of children’s involvement in decisions about research participation with their perceptions of the decision-making process and self-efficacy. Participants were children (ages 8-17) who enrolled in research studies in the prior 2 months. Children completed a questionnaire that yielded three decision-making involvement subscales: Researcher Engages Child, Researcher Supports Autonomy, and Child Participates. Children reported on fairness of the decision-making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher–child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.

Background Psychiatric comorbidity is common in pediatric medical and surgical hospitalizations and is associated with worse hospital outcomes. Integrating medical or surgical and psychiatric hospital care depends on accurate estimates of which hospitalized children have psychiatric comorbidity. Objective We conducted a study to determine agreement of family report (FR) and clinician documentation (CD) identification of psychiatric diagnoses in hospitalized children. Design and setting This was a cross-sectional study at a tertiary-care children's hospital. Patients The patients were children and adolescents (age, 4-21 years) who were hospitalized for medical or surgical indications. Measurements Psychiatric diagnoses were identified from structured interviews (FR) and from inpatient notes and International Classification of Diseases codes in medical records (CD). We compared estimates of point prevalence of any comorbid psychiatric diagnosis using each method, and estimated FR--CD agreement in identifying psychiatric comorbidity in hospitalized children. Results Of 119 study patients, 26 (22%; 95% confidence interval [CI], 14%-29%) had a psychiatric comorbidity identified by FR, 30 (25%; 95% CI, 17%-34%) had it identified by CD, and 37 (23%-40%) had it identified by FR or CD. Agreement between FR and CD was low overall (κ = .46; 95% CI, .27-.66), highest for attention-deficit/hyperactivity disorder (κ = .78; 95% CI, .59-.97), and lowest for anxiety disorders (κ = .11; 95% CI, -.16 to .56). Conclusions Current methods may underestimate the prevalence of psychiatric conditions in hospitalized children. Information from multiple sources may be needed to develop accurate estimates of the scope of the population in need of services so that mental health resources can be appropriately allocated. Journal of Hospital Medicine 2017;12.

From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician’s role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child’s preference in decision-making so long as the child’s decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation.

BACKGROUND AND OBJECTIVES: Understanding of parent anxiety and its effect on infant postoperative pain is limited. We sought to identify psychological factors associated with preoperative anxiety for parents of infants and toddlers undergoing elective surgery and to determine whether parent anxiety is associated with child postoperative pain. METHODS: This was a prospective cohort study of consecutively eligible patients aged ≤18 months undergoing craniofacial surgery and their parents. Preoperative parent assessment included anxiety, coping, parent health locus of control, and self-efficacy. Postoperative inpatient child pain scores and medication use were collected. Analyses included hierarchical multivariable logistic and linear regression models. RESULTS: Parents (n = 71, 90% female) of young children (mean age 6.6 months) undergoing cleft lip or palate (n = 59) or cranial vault repair (n = 13) were enrolled. Maladaptive coping (odds ratio 1.3; 95% confidence interval, 1.1–1.6), low parent self-efficacy (odds ratio 2.4; 95% confidence interval, 1.3–4.5), and external locus of control (odds ratio 1.74; 95% confidence interval, 1.1–2.9) were independently associated with high parental anxiety. The adjusted odds of moderate/severe parent anxiety was 3.6 (95% confidence interval, 1.5–9.1) higher with each SD increase in maladaptive coping. High parental anxiety was correlated with significantly higher hospital mean child pain scores (1.87 points on 0–10 scale; 95% confidence interval, 0.42–3.70; P = .045). CONCLUSIONS: Coping and self-efficacy are modifiable factors that contribute to parent anxiety before and during hospitalization and may be targets for intervention. Infants and toddlers undergoing elective craniofacial surgery with highly anxious parents may be at greater risk for higher postoperative pain.

Spondyloarthritis (SpA) is a chronic inflammatory arthritis that affects 0.9 to 1.4% of adults in the United States1 and is characterized by peripheral arthritis, enthesitis, dactylitis, acute anterior uveitis, HLA-B27 positivity, inflammatory back pain, and sacroiliitis. The term SpA encompasses ankylosing spondylitis (AS), undifferentiated SpA, inflammatory bowel disease associated arthritis, psoriatic arthritis, and reactive arthritis. The term juvenile SpA refers to SpA that starts during childhood. Under the newer International Leagues of Associations for Rheumatology (ILAR) juvenile idiopathic arthritis (JIA) classification scheme2, most children with JSpA fall into the categories of enthesitis related arthritis (ERA), psoriatic arthritis, and undifferentiated arthritis. Treatment regimens for JSpA are suboptimal and primarily based on those developed for adults with AS, adult RA and children with other JIA categories.3 In comparison to other categories of JIA, children with JSpA have more frequent and higher intensity pain and poorer health status.4-6 They are less likely to achieve and to sustain inactive disease than other JIA categories.7,8 Further, observational studies suggest that less than 20% of children with JSpA achieve remission within five years of diagnosis.9 Progress in finding more effective therapies for JSpA cannot be made without validated and highly discriminatory instruments to assess disease activity and response to treatments. The frequent use of a highly responsive composite disease activity score (DAS) greatly contributes to improved outcomes in rheumatoid arthritis (RA).10 The Tight Control for Rheumatoid Arthritis (TICORA) study demonstrated that in comparison to routine care, intensive outpatient management that included close monitoring of a composite DAS, monthly follow-up and aggressive treatment decisions based on the DAS improved remission rates by 4-fold (16% versus 65%) at 18 months.10 Several disease activity indices have been developed for adults with AS, including the AS disease activity score (ASDAS)11, and the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI).12 Since JSpA has less axial disease than adults with ankylosing spondylitis and since the BASDAI is predominantly focused on axial symptoms it is unlikely to be as useful in this pediatric population. Neither of these indices has been validated in children. Outcome measures available for monitoring JIA disease outcomes and activity include the ACR pedi-30/50/70/9013, and the Juvenile Arthritis Disease Activity Score (JADAS).14 The pedi ACR 30/50/70/90 are dichotomous and must always have a baseline measurement for comparison; therefore, the measure does not provide a continuous scale by which to assess disease activity and response levels cannot be compared across patients because each has a unique baseline value. JSpA patients were included in the validation study of the JADAS but were a minority (

Context Appropriate use of opioids is essential to manage moderate-to-severe pain in children safely and effectively, yet published guidance regarding opioid treatment for pediatric patients is limited, potentially resulting in excessive variation in opioid use in pediatric patients across hospitals in the U.S. Objectives The aim was to evaluate hospital variation in opioid use in pediatric inpatients. Methods Using data from the Pediatric Health Information System and the Premier Perspective Database regarding all pediatric inpatients in 626 hospitals, we examined hospital variation in opioid use and the length of opioid use, adjusting for patient demographic and clinical characteristics and for hospital type (children's vs. general) and hospital patient volume, using multilevel generalized linear regression modeling. Results Overall, 41.2% of all pediatric hospitalizations were exposed to opioids. Among the exposed patients, the mean length of exposure was 4.6 days. Exposure proportion and exposure length varied substantially across hospitals, even after accounting for patient demographic and clinical characteristics, hospital type and hospital patient volume, especially among terminal hospitalizations. For patients discharged alive vs. died, the adjusted exposure percentage for each hospital ranged from 0.7% to 99.1% (interquartile range [IQR]: 35.3%–59.9%) vs. 0.1% to 100.0% (IQR: 29.2%–66.2%), respectively, and the adjusted exposure length ranged from 1.0 to 8.4 days (IQR: 2.2–2.7 days) vs. 0.9 to 35.2 days (IQR: 4.0–7.4 days). Conclusion The substantial hospital-level variation in opioid use in pediatric inpatients suggests room for improvement in clinical practice.

Purpose Concordance between parents of children with advanced cancer and health care providers has not been described. We aimed to describe parent-provider concordance regarding prognosis and goals of care, including differences by cancer type. Patients and Methods A total of 104 pediatric patients with recurrent or refractory cancer were enrolled at three large children's hospitals. On enrollment, their parents and providers were invited to complete a survey assessing perceived prognosis and goals of care. Patients' survival status was retrospectively abstracted from medical records. Concordance was assessed via discrepancies in perceived prognosis, κ statistics, and McNemar's test. Distribution of categorical variables and survival rates across cancer type were compared with Fisher's exact and log-rank tests, respectively. Results Data were available from 77 dyads (74% of enrolled). Parent-provider agreement regarding prognosis and goals of care was poor (κ, 0.12 to 0.30). Parents were more likely to report cure was likely (P < .001). The frequency of perceived likelihood of cure and the goal of cure varied by cancer type for both parents and providers (P < .001 to .004). Relatively optimistic responses were more common among parents and providers of patients with hematologic malignancies, although there were no differences in survival. Conclusion Parent-provider concordance regarding prognosis and goals in advanced pediatric cancer is generally poor. Perceptions of prognosis and goals of care vary by cancer type. Understanding these differences may inform parent-provider communication and decision making.

1. Tammy I. Kang, MD, MSCE* 2. David Munson, MD* 3. Jennifer Hwang, MD, MHS* 4. Chris Feudtner, MD, PhD, MPH* 1. *The Children’s Hospital of Philadelphia, Philadelphia, PA * Abbreviations: AAP: : American Academy of Pediatrics CCC: : concurrent care for children NICU: : neonatal intensive care unit PPC: : pediatric palliative care The 2013 American Academy of Pediatrics (AAP) Policy Statement “Pediatric Palliative Care and Hospice Care: Commitments, Guidelines, and Recommendations” urges broader integration of palliative care into overall medical care plans not only for terminally ill infants and children but also for those with life-threatening or life-shortening illnesses. Despite supportive federal legislation, the AAP recommendations have not been implemented consistently because of inadequate training, lack of funding, entrenched professional attitudes, and lack of an evidence base for assessments and interventions. To overcome these barriers, pediatric health care clinicians should educate themselves, their patients, their practices, and their health care systems on the benefits of earlier palliative care intervention. During the past decade the field of pediatric palliative care (PPC) has transformed. Palliative care services, once thought to be suitable only for patients in the last stages of life or reserved for patients engaging hospice services, are now being used much more broadly. No longer restricted to just the provision of end-of-life care, palliative care for children is now best understood as encompassing a combination of medical, psychosocial, and spiritual care that enables children with serious, life-threatening illnesses to maximize quality of life while making medical decisions based on the goals and values of the patient and family. Integrating palliative care into the overall plan of medical care for children with serious illness is a key therapeutic goal. In 2013, the American Academy of Pediatrics (AAP) published a policy statement entitled “Pediatric Palliative Care and Hospice Care: Commitments, Guidelines, and Recommendations” that aimed to promote the welfare of infants and children living with life-threatening or inevitably life-shortening conditions and their …

Context Pediatric oncology patients often receive prolonged courses of opioids, which can result in constipation. Objectives Comparing patients who received senna matched with similar patients who received other oral bowel medications, determine the subsequent risk of "problematic constipation," assessed as the occurrence of the surrogate markers of receiving an enema, escalation of oral bowel medications, and abdominal radiographic imaging. Methods This was a retrospective cohort study of hospitalized pediatric oncology patients less than 21 years of age in 78 children's and adult hospitals between 2006 and 2011 who were started on seven consecutive days or more of opioid therapy and were started on an oral bowel medication within the first two days of opioid therapy. Clinically detailed administrative data were used from the Pediatric Health Information System and the Premier Perspective Database. After performing propensity score matching of similar patients who started senna and who started a different oral bowel medication, Cox regression modeling was used to compare the subsequent hazard of the surrogate markers. Results The final matched sample of 586 patients averaged 11.5 years of age (range 0–20 years); 41.8% (n = 245) had blood cancer, 50.3% (n = 295) had solid tumor cancer, and 7.9% (n = 46) had brain cancer. Initiating senna therapy within two days of starting the prolonged opioid course, compared with initiating another oral bowel medication, was significantly associated with a lower hazard during the ensuing five days for receipt of an enema (hazard ratio [HR], 0.31; 95% CI, 0.11–0.91) or undergoing abdominal radiographic imaging (HR, 0.74; 95% CI, 0.55–0.98), was marginally associated with a lower hazard of oral bowel medicine escalation (HR, 0.78; 95% CI, 0.59–1.03), and overall was significantly associated with a lower hazard of the composite end point of problematic constipation (HR, 0.70; 95% CI, 0.56–0.88). Conclusion Initiating senna therapy, compared with other oral bowel medications, diminishes the subsequent risk of surrogate markers of problematic constipation in this population.

Background Better knowledge of patient and cancer treatment factors associated with nausea/vomiting (NV) in pediatric oncology patients could enhance prophylaxis. We aimed to describe such factors in children receiving treatment for acute myeloid leukemia (AML). Methods Retrospective longitudinal cohort study of 1,668 hospitalized children undergoing treatment for AML from the Pediatric Health Information System database (39 hospitals, 1999–2010). Antiemetic alteration, which included switch (a change in prescribed 5-HT3 receptor antagonists) and rescue (receipt of an adjunct antiemetic), were first validated and then used as surrogates of problematic NV. Logistic and negative binomial regression modeling were used to test whether patient characteristics were associated with problematic NV. Results Increasing age is associated with greater odds of experiencing antiemetic switch and higher relative rate of antiemetic rescue. Within a treatment cycle, each consecutive inpatient chemotherapy day decreased the likelihood of requiring antiemetic alteration. Each consecutive inpatient-day post-chemotherapy was associated with decreased need for switch, but increased need for rescue. Subsequent cycles of AML therapy were associated with lower odds of antiemetic switch on both chemotherapy and non-chemotherapy days, a lower rate of antiemetic rescue on chemotherapy days, and an increased rate of rescue on non-chemotherapy days. Conclusion In pediatric patients with AML, increasing age is strongly associated with greater antiemetic alteration. Antiemetic alteration occurs early in treatment overall, and early within each admission. While additional cycles of therapy are associated with less alteration overall, there is persistent rescue in the days after chemotherapy, suggesting additional etiologies of NV in pediatric cancer patients. Pediatr Blood Cancer 2014; 61:1798–1805. © 2014 Wiley Periodicals, Inc.

To identify factors important to parents making decisions for their critically ill child.Prospective cross-sectional study.Single center, tertiary care PICU.Parents making critical treatment decisions for their child.One-on-one interviews that used the Good Parent Tool-2 open-ended question that asks parents to describe factors important for parenting their ill child and how clinicians could help them achieve their definition of "being a good parent" to their child. Parent responses were analyzed thematically. Parents also ranked themes in order of importance to them using the Good Parent Ranking Exercise.Of 53 eligible parents, 43 (81%) participated. We identified nine themes through content analysis of the parent's narrative statements from the Good Parent Tool. Most commonly (60% of quotes) components of being a good parent described by parents included focusing on their child's quality of life, advocating for their child with the medical team, and putting their child's needs above their own. Themes key to parental decision making were similar regardless of parent race and socioeconomic status or child's clinical status. We identified nine clinician strategies identified by parents as helping them fulfill their parenting role, most commonly, parents wanted to be kept informed (32% of quotes). Using the Good Parent Ranking Exercise, fathers ranked making informed medical decisions as most important, whereas mothers ranked focusing on the child's health and putting their child's needs above their own as most important. However, mothers who were not part of a couple ranked making informed medical decisions as most important.These findings suggest a range of themes important for parents to "be a good parent" to their child while making critical decisions. Further studies need to explore whether clinician's knowledge of the parent's most valued factor can improve family-centered care.

Objective With increasing exposure, medical students may forget that technical jargon is unfamiliar to laypeople. To investigate this possibility, authors assessed student perceptions of patient understanding across different years in medical school. Methods 533 students at 4 U.S. medical schools rated the proportion of patients likely to understand each of twenty-one different jargon terms. Students were either in the first month of their first year, the middle of their first year, or the middle of their fourth year of medical school. Results Fourth-year students were slightly more pessimistic about patients’ understanding compared to new first-year students (mean percent understanding of 55.1% vs. 58.6%, p = 0.004). Students both over- and under-estimated patient understanding of specific words compared to published estimates. In a multivariate model, other factors did not explain these differences. Conclusion Students do not generally presume that patients understand medical jargon. In many cases they actually underestimate patients’ understanding, and these estimates may become more pessimistic longitudinally. Jargon use in communication with patients does not appear to stem from unrealistic presumptions about patients’ understanding or from desensitization to jargon during medical school. Practice implications Training about patient knowledge of medical jargon may be a useful addition to communication skills curricula.

BACKGROUND The resurgence of pertussis is contributing to mounting healthcare worker (HCW) exposures, especially within pediatric outpatient settings. Infection prevention and control (IPC) guidelines for ambulatory sites exist, but are not uniformly implemented. Our aim was to identify facilitators and barriers to the use of IPC practices to prevent pertussis transmission in ambulatory pediatric settings. METHODS HCWs at 18 of 25 (72%) clinics in a pediatric ambulatory network completed a theory-based questionnaire about pertussis and personal protective equipment (PPE). The questionnaire contained randomly distributed versions of two vignettes to create an experimental design assessing barriers to PPE use. RESULTS Three hundred forty-three of 467 (73%) HCWs completed the survey: 234 (68%) clinical and 109 (32%) nonclinical. Seventy-one percent of clinical HCWs reported wearing PPE when caring for a patient with suspected pertussis; only 27% used PPE for patients with any respiratory symptoms. Among clinical HCWs, reported PPE use when caring for patients with suspected pertussis was independently associated with attitudes toward PPE (odds ratio [OR] 5.4, 95% confidence interval [CI] 1.8, 16.6), knowledge and skills (OR 4.6, 95% CI 1.4, 15.2), and lack of perceived barriers (OR 3.2, 95% CI 1.3, 7.9). HCWs who did not perceive PPE use as a norm were less likely to report using PPE (OR 0.2, 95% CI 0.1, 0.6) or distributing masks to patients with cough (OR 0.02, 95% CI 0.00, 0.2). Reported PPE use was not influenced by perceived infection risk or mask accessibility. CONCLUSION Our results identified barriers to PPE use and targets for education to prevent pertussis transmission in ambulatory pediatric settings.

Context Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. Objectives To describe perceived financial hardship, work disruptions, income losses, and associated economic impact in families of children with advanced cancer stratified by federal poverty level (FPL). Methods Cross-sectional survey of 86 parents of children with progressive, recurrent, or nonresponsive cancer at three children's hospitals. Seventy-one families with complete income data (82%) are included in this analysis. Results Parental work disruptions were prevalent across all income levels, with 67 (94%) families reporting some disruption. At least one parent quit a job because of the child's illness in 29 (42%) families. Nineteen (27%) families described their child's illness as a great economic hardship. Income losses because of work disruptions were substantial for all families; families at or below 200% FPL, however, were disproportionately affected. Six (50%) of the poorest families lost more than 40% of their annual income as compared with two (5%) of the wealthiest families ( P = 0.006). As a result of income losses, nine (15%) previously nonpoor families fell from above to below 200% FPL. Conclusion The economic impact of pediatric advanced cancer on families is significant at all income levels, although poorer families suffer disproportionate losses. Development of ameliorative intervention strategies is warranted.

Administrative data are increasingly used to evaluate clinical outcomes and quality of care in pediatric congenital heart surgery (CHS) programs. Several published analyses of large pediatric administrative data sets have relied on the All Patient Refined Diagnosis Related Groups (APR-DRG, version 24) diagnostic classification system. The accuracy of this classification system for patients undergoing CHS is unclear.We performed a retrospective cohort study of all 14,098 patients 0 to 5 years of age undergoing any of six selected congenital heart operations, ranging in complexity from isolated closure of a ventricular septal defect to single-ventricle palliation, at 40 tertiary-care pediatric centers in the Pediatric Health Information Systems database between 2007 and 2010. Assigned APR-DRGs (cardiac versus noncardiac) were compared using χ2 or Fisher's exact tests between those patients admitted during the first day of life versus later and between those receiving extracorporeal membrane oxygenation support versus those not. Recursive partitioning was used to assess the greatest determinants of APR-DRG type in the model.Every patient admitted on day 1 of life was assigned to a noncardiac APR-DRG (p0.001 for each procedure). Similarly, use of extracorporeal membrane oxygenation was highly associated with misclassification of CHS patients into a noncardiac APR-DRG (p0.001 for each procedure). Cases misclassified into a noncardiac APR-DRG experienced a significantly increased mortality (p0.001).In classifying patients undergoing CHS, APR-DRG coding has systematic misclassifications, which may result in inaccurate reporting of CHS case volumes and mortality.

Context To dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the U.S. and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship. Objectives The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities. Methods The workshop focused on PPC research topics and methods, including outcomes measurement, qualitative inquiry, analyses of big data, prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report. Results Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research on participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education. Conclusion These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.

OBJECTIVEThe Management of Myelomeningocele Study (MOMS) compared prenatal with postnatal surgery for myelomeningocele (MMC). The present study sought to determine how MOMS influenced the clinical recommendations of pediatric neurosurgeons, how surgeons’ risk tolerance affected their views, how their views compare to those of their colleagues in other specialties, and how their management of hydrocephalus compares to the guidelines used in the MOMS trial.METHODSA cross-sectional survey was sent to all 154 pediatric neurosurgeons in the American Society of Pediatric Neurosurgeons. The effect of surgeons’ risk tolerance on opinions and counseling of prenatal closure was determined by using ordered logistic regression.RESULTSCompared to postnatal closure, 71% of responding pediatric neurosurgeons viewed prenatal closure as either “very favorable” or “somewhat favorable,” and 51% reported being more likely to recommend prenatal surgery in light of MOMS. Compared to pediatric surgeons, neonatologists, and maternal-fetal medicine specialists, pediatric neurosurgeons viewed prenatal MMC repair less favorably (p < 0.001). Responders who believed the surgical risks were high were less likely to view prenatal surgery favorably and were also less likely to recommend prenatal surgery (p < 0.001). The management of hydrocephalus was variable, with 60% of responders using endoscopic third ventriculostomy in addition to ventriculoperitoneal shunts.CONCLUSIONSThe majority of pediatric neurosurgeons have a favorable view of prenatal surgery for MMC following MOMS, although less so than in other specialties. The reported acceptability of surgical risks was strongly predictive of prenatal counseling. Variation in the management of hydrocephalus may impact outcomes following prenatal closure.

* Abbreviations: AAP — : American Academy of Pediatrics ACOG — : American College of Obstetricians and Gynecologists MMCTF — : Myelomeningocele Maternal-Fetal Management Task Force convened by the Eunice Kennedy Shriver National Institute of Child Health and Human Development MOMS — : Management of Myelomeningocele Study Prenatal decision-making for myelomeningocele changed in 2011, when MOMS (Management of Myelomeningocele Study) demonstrated the effectiveness of intrauterine fetal surgery, thereby securing this intervention as an alternative to either pregnancy termination or postnatal repair.1 Although it is hoped that an evidence-based approach to medical decisions using the MOMS results would improve the quality of information received by pregnant patients, we believe that unless specific steps are taken, prenatal counseling for myelomeningocele (counseling that occurs in myriad locations across the United States) will be persistently marred by hidden biases and excess variability. We believe this prenatal counseling will be affected for 3 reasons. First, the MOMS results present tradeoffs. Rates of ventriculoperitoneal shunt placement and ambulation were improved for children who underwent prenatal repair but with higher rates of prematurity and respiratory distress syndrome, as well as important maternal complications. Adding to the uncertainty, long-term outcomes are unavailable; prognosis remains difficult to predict for any given fetus; and posttrial complication rates reportedly differ from trial results, with higher rates of perinatal death (6% vs 3%) and respiratory distress syndrome (52% vs 21%) but fewer maternal complications (pulmonary edema, 2% vs 6%; maternal transfusion, 3.4% vs 9%).1 Women undergoing intrauterine surgery require cesarean deliveries for all future pregnancies. The reasoning regarding such multifaceted risk/benefit tradeoffs for obstetric and neonatal interventions is notably difficult for both physicians and patients.2 Second, physicians commonly have differing opinions regarding … Address correspondence to Stephen D. Brown, MD, Department of Radiology, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail: stephen.brown{at}childrens.harvard.edu

Objective To evaluate the distribution of enthesitis and the accuracy of physical examination with a dolorimeter for the detection of enthesitis in children, using ultrasound (US) assessment as the reference standard. Methods We performed a prospective cross-sectional study of 30 patients with enthesitis-related arthritis (ERA) and 30 control subjects. The following tendon insertion sites were assessed by standardized physical examination with a dolorimeter and US: common extensor on the lateral humeral epicondyle, common flexor on the medial humeral epicondyle, quadriceps at the superior patella, patellar ligament at the inferior patella, Achilles, and plantar fascia at the calcaneus. Results Abnormal findings on US were detected most commonly at the insertion of the quadriceps (30% [18 of 60 sites]), common extensor (12% [7 of 60]), and Achilles (10% [6 of 60]) tendons. The intrarater reliability of US (kappa statistic) was 0.78 (95% confidence interval [95% CI] 0.63–0.93), and the interrater reliability was 0.81 (95% CI 0.67–0.95). Tenderness as detected by standardized dolorimeter examination had poor positive predictive value for US-confirmed enthesitis. In comparison to controls, patients with ERA reported more pain and had lower pain thresholds at every site, including control sites (P < 0.001 for all comparisons). The interrater reliability of dolorimeter examination for detection of enthesitis was low (κ = 0.49 [95% CI 0.33–0.65]). Conclusion Compared to US, standardized dolorimeter examination for the detection of enthesitis in children has poor accuracy and reliability. The decreased pain threshold of ERA patients likely contributed to the limited accuracy of the physical examination findings. Further research regarding the utility of US for identifying enthesitis at diagnosis of juvenile idiopathic arthritis, accurately predicting disease progression, and guiding therapeutic decisions is warranted.

BACKGROUND Reducing avoidable readmission and posthospitalization emergency department (ED) utilization has become a focus of quality-of-care measures and initiatives. For pediatric patients, no systematic efforts have assessed the evidence for interventions to reduce these events. PURPOSE We sought to synthesize existing evidence on pediatric discharge practices and interventions to reduce hospital readmission and posthospitalization ED utilization. DATA SOURCES PubMed and the Cumulative Index to Nursing and Allied Health Literature. STUDY SELECTION Studies available in English involving pediatric inpatient discharge interventions with at least 1 outcome of interest were included. DATA EXTRACTION We utilized a modified Cochrane Good Practice data extraction tool and assessed study quality with the Downs and Black tool. DATA SYNTHESIS Our search identified a total of 1296 studies, 14 of which met full inclusion criteria. All included studies examined multifaceted discharge interventions initiated in the inpatient setting. Overall, 2 studies demonstrated statistically significant reductions in both readmissions and subsequent ED visits, 4 studies demonstrated statistically significant reductions in either readmissions or ED visits, and 2 studies found statistically significant increases in subsequent utilization. Several studies were not sufficiently powered to detect changes in either subsequent utilization outcome measure. CONCLUSIONS Interventions that demonstrated reductions in subsequent utilization targeted children with specific chronic conditions, providing enhanced inpatient feedback and education reinforced with postdischarge support. Interventions seeking to reduce subsequent utilization should identify an individual or team to assume responsibility for the inpatient-to-outpatient transition and offer ongoing support to the family via telephone or home visitation following discharge. Journal of Hospital Medicine 2014;9:251–260. © 2013 Society of Hospital Medicine

Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital- and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases. * Abbreviations: AAP — : American Academy of Pediatrics PPC-PHC — : pediatric palliative care and pediatric hospice care

OBJECTIVE: To evaluate whether differences between pediatric male and female mortality are due to differences in specific age ranges, specific disease categories, or differences in the risk of developing specific conditions versus the risk of dying once having developed the condition. METHODS: Using 1999–2008 mortality data for all deaths of individuals RESULTS: Males experience higher mortality rates in all age groups from birth to age 20 years (RR: 1.44; 95% confidence interval [CI]: 1.44–1.45) and among infant deaths in nearly all weekly gestational age strata (RR: 1.12; 95% CI: 1.11–1.12). Stratified by ICD-10 major disease categories, males experience higher mortality rates in 17 of 19 categories. For the 7 types of pediatric cancers, the overall pattern was similarly greater male incidence (RR: 1.13; 95% CI: 1.12–1.14), fatality rate (RR: 1.10; 95% CI: 1.07–1.13), and overall mortality (RR: 1.21; 1.18–1.25). CONCLUSIONS: Under 20 years of age, males die more than females from a wide array of underlying conditions. The potential genetic and hormonal mechanisms for the mortality difference between males and females warrant investigation.

Background The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. Objective (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left ‘hopeless’. Method Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians. Results The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65–66%) and hope domains (59–63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively). Conclusion Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.

Conflicts between families and clinicians in pediatric end-of-life (EOL) care cause distress for providers, dissatisfaction for patients' families, and potential suffering for terminally ill children.We hypothesized that family factors might influence clinician decision making in these circumstances.We presented vignettes concerning difficult EOL decision making, randomized for religious objection to therapy withdrawal and perceived level of family involvement, to clinicians working in three Children's Hospital intensive care units. Additionally, attitudes about EOL care were assessed.Three hundred sixty-four respondents completed the questionnaire, for an overall response rate of 54%. Respondents receiving the "involved family" vignette were more likely to agree to continue medical care indefinitely (P0.0005). Respondents were marginally more likely to pursue a court-appointed guardian for those patients whose families had nonreligious objections to withdrawal (P=0.05). Respondents who thought that a fear of being sued affected decisions were less likely to pursue unilateral withdrawal (odds ratio 0.8, 95% CI=0.6-0.9). Those who felt personal distress as a result of difficult EOL decision making, thought they often provided "futile" care, or those who felt EOL care was effectively addressed at the institution were less likely to want to defer to the parents' wishes (range of odds ratios 0.7-1).In this randomized vignette study, we have shown that family factors, particularly how involved a family seems to be in a child's life, affect what clinicians think is ethically appropriate in challenging EOL cases. Knowledge of how a family's degree of involvement may affect clinicians should be helpful to the clinical ethics consultants and offer some degree of insight to the clinicians themselves.

OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by parents of children with life-threatening illnesses when confronting and making medical decisions. METHODS: Prospective cross-sectional observational study of 69 parents of 46 children who participated in the Decision-making in Pediatric Palliative Care Study between 2006 and 2008 at the Children’s Hospital of Philadelphia. Parents were guided individually through a semistructured in-depth interview about their experiences and thoughts regarding making medical decisions on behalf of their ill children, and the transcribed interviews were qualitatively analyzed. RESULTS: All parents in our study employed explicit heuristics in interviews about decision-making for their children, with the number of identified explicit heuristics used by an individual parent ranging from tens to hundreds. The heuristics served 5 general functions: (1) to depict or facilitate understanding of a complex situation; (2) to clarify, organize, and focus pertinent information and values; (3) to serve as a decision-making compass; (4) to communicate with others about a complex topic; and (5) to justify a choice. CONCLUSIONS: Explicit heuristics played an important role in decision-making and communication about decision-making in our population of parents. Recognizing explicit heuristics in parent interactions and understanding their content and functions can aid clinicians in their efforts to partner with parents in the decision-making process.

Examine how pediatric and obstetrical subspecialists view benefits and burdens of prenatal myelomeningocele (MMC) closure.Mail survey of 1200 neonatologists, pediatric surgeons and maternal-fetal medicine specialists (MFMs).Of 1176 eligible physicians, 670 (57%) responded. Most respondents disagreed (68%, 11% strongly) that open fetal surgery places an unacceptable burden on women and their families. Most agreed (65%, 10% strongly) that denying the benefits of open maternal-fetal surgery is unfair to the future child. Most (94%) would recommend prenatal fetoscopic over open or postnatal MMC closure for a hypothetical fetoscopic technique that had similar shunt rates (40%) but decreased maternal morbidity. When the hypothetical shunt rate for fetoscopy was increased to 60%, physicians were split (49% fetoscopy versus 45% open). Views about burdens and fairness correlated with the likelihood of recommending postnatal or fetoscopic over open closure.Individual and specialty-specific values may influence recommendations about prenatal surgery.

Importance For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents’ emerging autonomy, they often must also work with parents’ wishes to protect patients from the emotional distress of hearing bad news. Observations We reviewed the ethical justifications for and against truth-telling, and we considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. We also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents’ lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. We suggest some “phrases that help” when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members. Conclusions and Relevance The pediatrician’s opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication, as well as augmented understanding of patient, family, and clinician perspectives may better enable us to navigate these important conversations.

Context Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. Objective To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives. Methods Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding three months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed-response items. Results Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (one missing response). Seventy-six parents (88%) answered free-response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life. Conclusion A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding three months. Although news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.

Social media, no stranger to health care environments, is increasingly used by patients, families, clinicians, and institutions to interact and engage in new ways. The ethical challenges related to the use of social media in the clinical setting are familiar, yet come with a novel twist, including the possibility of having a conflict “go viral”. Health care clinicians and institutions must understand and embrace these technologies, while at the same time promoting policies and practices that ensure the ethically appropriate use of social media and address strategies for preventing and responding to a social media crisis.

Background Children and adolescents necessitating hospitalization for physical health conditions are at high risk for mental health conditions; however, the prevalence of mental health conditions and symptoms among hospitalized children and adolescents is uncertain. The objective of this study was to determine the proportion of hospitalized children and adolescents who have diagnosed mental health disorders or undiagnosed mental health problems. Methods In this single-center point prevalence study of hospitalized children between the ages of 4 and 21 years, patients or their parents reported known mental health diagnoses and use of services using the Services Assessment for Children and Adolescent, and they reported patient mental health symptoms using the Pediatric Symptom Checklist, 17-item form (PSC-17). Results Of 229 eligible patients, 119 agreed to participate. Demographic characteristics of patients who enrolled were not statistically significantly different from those of patients who declined to participate. Among participants, 26% (95% confidence interval [CI], 18%–35%) reported a known mental health diagnosis. On the PSC-17, 29% (95% CI, 21%–38%) of participants had a positive screen for mental health symptoms. Of those with a positive screen, 38% (95% CI, 21%–55%) had no known mental health diagnosis, and 26% (95% CI, 12%–43%) had not received ambulatory mental health services in the 12 months before hospitalization. Conclusions Mental health conditions and symptoms are common among patients hospitalized in a tertiary children's hospital, and many affected patients are not receiving ambulatory mental health services.

BACKGROUND AND OBJECTIVES: Pediatric inpatients with communication impairment may experience inadequate pain and symptom management. Research regarding potential variation in care among patients with and without communication impairment is hampered because existing pediatric databases do not include information about patient communication ability per se, even though these data sets do contain information about diagnoses and medical interventions that are probably correlated with the probability of communication impairment. Our objective was to develop and evaluate a classification model to identify patients in a large administrative database likely to be communication impaired. METHODS: Our sample included 236 hospitalized patients aged ≥12 months whose ability to communicate about pain had been assessed. We randomly split this sample into development (n = 118) and validation (n = 118) sets. A priori, we developed a set of specific diagnoses, technology dependencies, procedures, and medications recorded in the Pediatric Health Information System likely to be strongly associated with communication impairment. We used logistic regression modeling to calculate the probability of communication impairment for each patient in the development set, assessed the model performance, and evaluated the performance of the 11-variable model in the validation set. RESULTS: In the validation sample, the classification model showed excellent classification accuracy (area under the receiver operating characteristic curve 0.92; sensitivity 82.6%; 95% confidence interval, 74%–100%; specificity 86.3%; 95% confidence interval, 80%–97%). For the complete sample, the predicted probability of communication impairment demonstrated excellent calibration with the observed communication impairment status. CONCLUSIONS: Hospitalized pediatric patients with communication impairment can be accurately identified in a large hospital administrative database.

Commentary on: Butler AE, Hall H, Willetts G, et al. Family experience and PICU death: a meta-synthesis. Pediatrics 2015;136:e961–73[OpenUrl][1][Abstract/FREE Full Text][2]. Beyond the newborn period, the death of a hospitalised child is most likely to occur in the paediatric intensive care unit (PICU). While intensive care environments typically provide highly technical care aimed at sustaining life, growing awareness and acceptance of palliative … [1]: {openurl}?query=rft.jtitle%253DPediatrics%26rft_id%253Dinfo%253Adoi%252F10.1542%252Fpeds.2015-1068%26rft_id%253Dinfo%253Apmid%252F26371203%26rft.genre%253Darticle%26rft_val_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Ajournal%26ctx_ver%253DZ39.88-2004%26url_ver%253DZ39.88-2004%26url_ctx_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Actx [2]: /lookup/ijlink?linkType=ABST&journalCode=pediatrics&resid=136/4/e961&atom=%2Febnurs%2F19%2F4%2F118.atom

My colleagues and I had been asked by a member of a clinical team to help sort through the ethics of stopping a life-sustaining intervention for a very ill child. We had already talked with the parents, the physicians, and the folks from nursing, social work, and chaplaincy. Terms like "suffering," "cruel," "compassion," and "moral distress" had been uttered, as had terms like "inappropriate," "unethical," "neglectful," and "risk-management." The group had now stuffed all of these polarizing thoughts and feelings into this cramped room with only one door. And everyone was looking at me. What skill, competency, or inner capacity must one possess to hold and manage such tension?