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1.  Development of Hospital-Based Guidelines for Skeletal Survey in Young Children With Bruises 
Pediatrics  2015;135(2):e312-e320.
To develop guidelines for performing an initial skeletal survey (SS) for children <24 months of age presenting with bruising in the hospital setting, combining available evidence with expert opinion.
Applying the Rand/UCLA Appropriateness Method, a multispecialty panel of 10 experts relied on evidence from the literature and their own clinical expertise in rating the appropriateness of performing SS for 198 clinical scenarios characterizing children <24 months old with bruising. After a moderated discussion of initial ratings, the scenarios were revised. Panelists re-rated SS appropriateness for 219 revised scenarios. For the 136 clinical scenarios in which SS was deemed appropriate, the panel finally assessed the necessity of SS.
Panelists agreed that SS is “appropriate” for 62% (136/219) of scenarios, and “inappropriate” for children ≥12 months old with nonpatterned bruising on bony prominences. Panelists agreed that SS is “necessary” for 95% (129/136) of the appropriate scenarios. SS was deemed necessary for infants <6 months old regardless of bruise location, with rare exceptions, but the necessity of SS in older children depends on bruise location. According to the panelists, bruising on the cheek, eye area, ear, neck, upper arm, upper leg, hand, foot, torso, buttock, or genital area necessitates SS in children <12 months.
The appropriateness and necessity of SS in children presenting for care to the hospital setting with bruising, as determined by a diverse panel of experts, depends on age of the child and location of bruising.
PMCID: PMC4306798  PMID: 25601982
bruise; child abuse; child maltreatment; skeletal survey; trauma
2.  Variability in Antibiotic Use at Children's Hospitals Throughout the United States 
Pediatrics  2010;126(6):1067-1073.
Variation in medical practice has identified opportunities for quality improvement in patient care. The degree of variation in the use of antibiotics in children's hospitals is unknown.
We conducted a retrospective cohort study of 556,692 consecutive pediatric inpatient discharges from 40 freestanding children's hospitals between January 1, 2008 and December 31, 2008. We used the Pediatric Health Information System to acquire data on antibiotic use and clinical diagnoses.
Overall, 60% of children received at least one antibiotic agent during their hospitalization, including more than 90% of patients who had surgery, underwent central venous catheter placement, had prolonged ventilation, or remained in the hospital for greater than 14 days. Even after adjustment for both hospital-level and patient-level demographic and clinical characteristics, antibiotic use varied substantially across hospitals as both the proportion of children exposed to antibiotics (38 to 72%) and the number of days children received antibiotics (368 to 601 antibiotic days per 1000 patient days) ranged broadly. In general, hospitals using more antibiotics also used a higher proportion of broad-spectrum antibiotics.
Children's hospitals vary substantially in their use of antibiotics, to a degree unexplained by patient or hospital-level factors typically associated with the need for antibiotic therapy, revealing an opportunity to improve the use of these drugs.
PMCID: PMC4677056  PMID: 21078728
antimicrobials; children; hospital; variability
3.  Development and Retrospective Validation of the Juvenile Spondyloarthritis Disease Activity (JSpADA) Index 
Arthritis care & research  2014;66(12):1775-1782.
To develop and validate a Juvenile Spondyloarthritis (JSpA) Disease Activity (JSpADA) index for use in clinical practice and research.
Using modified Delphi consensus techniques, ten items were selected by participants in the international pediatric rheumatology list-serve, the Childhood Arthritis and Rheumatology Research Alliance, and the list-serve for the Pediatric Section of the American College of Rheumatology. Validation was performed in a retrospective multicenter cohort of 243 children.
106 physicians representing 14 countries completed the initial questionnaire. Completion rates for the subsequent questionnaires were 84%, 75%, and 77% of the original respondents. Ten items reached 80% consensus: arthritis, enthesitis, patient pain assessment, inflammatory markers, morning stiffness, clinical sacroiliitis, uveitis, back mobility, and patient and physician assessments of disease activity. Two items were eliminated after item analysis (patient and physician assessments of disease activity). Factor analysis identified 3 primary domains that explain 58% of variance: peripheral disease, axial disease, and uveitis. Cronbach α coefficient was 0.66. The JSpADA had high or moderate correlations with the Juvenile Arthritis disease activity score (r=0.80), patient and physician assessments of disease activity (r=0.70 and 0.66), and the Childhood Health Assessment Questionnaire (r=0.56). The JSpADA discriminated well between subjects with active versus inactive disease (p<0.001) and was responsive to improvement or worsening in disease activity over time (p<0.001).
Using international input and consensus formation techniques, we developed and validated the first disease activity assessment for JSpA. Future studies should validate the JSpADA index in a prospective multi-center cohort.
PMCID: PMC4245319  PMID: 25047959
4.  Accuracy of the All Patient Refined Diagnosis Related Groups Classification System in Congenital Heart Surgery 
The Annals of thoracic surgery  2013;97(2):641-650.
Administrative data is increasingly used to evaluate clinical outcomes and quality of care in pediatric congenital heart surgery (CHS) programs. Several published analyses of large pediatric administrative datasets 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 0-5 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 non-cardiac) were compared using chi-squared 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 not. Recursive partitioning was used to assess the greatest determinants of APR-DRG type in the model.
Every patient admitted on day of life 1 was assigned to a non-cardiac APR-DRG (p < 0.001 for each procedure). Similarly, use of extracorporeal membrane oxygenation was highly associated with misclassification of congenital heart surgery patients into a non-cardiac APR-DRG (p < 0.001 for each procedure). Cases misclassified into a non-cardiac APR-DRG experienced a significantly increased mortality (p < 0.001).
In classifying patients undergoing congenital heart surgery, APR-DRG coding has systematic misclassifications, which may result in inaccurate reporting of CHS case volumes and mortality.
PMCID: PMC4624088  PMID: 24200398
Congenital Heart Disease, CHD; Pediatric; Neonate; Extracorporeal Membrane Oxygenation, ECMO; Outcomes
5.  What's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer 
Journal of Palliative Medicine  2014;17(8):953-956.
Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions.
Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions.
Design: Cross-sectional, survey-based study embedded within a randomized controlled trial.
Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH).
Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress.
Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents.
Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.
PMCID: PMC4118710  PMID: 24865204
6.  Development of Guidelines for Skeletal Survey in Young Children With Fractures 
Pediatrics  2014;134(1):45-53.
To develop guidelines for performing initial skeletal survey (SS) in children <24 months old with fractures, based on available evidence and collective judgment of experts from diverse pediatric specialties.
Following the Rand/UCLA Method, a multispecialty panel of 13 experts applied evidence from a literature review combined with their own expertise in rating the appropriateness of performing an SS for 525 clinical scenarios involving fractures in children <24 months old. After discussion on the initial ratings, panelists rerated SS appropriateness for 240 revised scenarios and deemed that SSs were appropriate in 191 scenarios. The panelists then assessed in which of those 191 scenarios SSs were not only appropriate, but also necessary.
Panelists agreed that SS is “appropriate” for 191 (80%) of 240 scenarios rated and “necessary” for 175 (92%) of the appropriate scenarios. Skeletal survey is necessary if a fracture is attributed to abuse, domestic violence, or being hit by a toy. With few exceptions, SS is necessary in children without a history of trauma. In children <12 months old, SS is necessary regardless of the fracture type or reported history, with rare exceptions. In children 12 to 23 months old, the necessity of obtaining SS is dependent on fracture type.
A multispecialty panel reached agreement on multiple clinical scenarios for which initial SS is indicated in young children with fractures, allowing for synthesis of clinical guidelines with the potential to decrease disparities in care and increase detection of abuse.
PMCID: PMC4067633  PMID: 24935996
child abuse; child maltreatment; fracture; skeletal survey; trauma
7.  Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care 
AJOB primary research  2012;3(1):1-7.
Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized.
As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital’s pediatric palliative care service. The semistructured interviews focused on “decision making for your child”; the interviews were recorded and transcribed. A random sample (n = 13) was first coded and analyzed for core themes, and these themes were then cross-validated with a second random sample (n = 3) of interviews.
Four dominant interrelated themes permeated parents’ discussions about the decisions they were making for their children and the process of decision making. First, Orientation and Direction (including the subthemes of Goals and Hopes, Spirituality and Meaning, and Purposeful Effort) connotes the parents’ effort to establish and clarify the broad context of decision making. Second, Defining What Is Good for the Child (including the subthemes of Quality of Life and Suffering, and Normalcy and Normalization) conveys how the parents posed questions and pondered what decisions would be in the child’s best interests. Third, the entwined theme of Relationships, Communication, and Support reflects how parents reported the social and interactive nature of decision making. Fourth, the theme of Feelings and Personal Accountability focuses inward as parents report efforts to deal with their emotional responses and self-judgments.
Parents report grappling with several influences upon their decision-making processes that extend well beyond the standard discussions of medical information exchanges and the evaluation of risks and benefits. Decision support for these parents should account for these diverse influences.
PMCID: PMC4484775  PMID: 26137345
decision making; decision support; ethics; palliative care; pediatrics; social support
8.  Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial 
Journal of Clinical Oncology  2014;32(11):1119-1126.
This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL).
Patients and Methods
This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2 years old with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question. In the intervention group (n = 51), oncologists and families received printed reports summarizing PROs; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded. No feedback was provided in the control group (n = 53). Primary outcomes included linear trends of MSAS, PedsQL4.0 total and subscale scores, and Sickness scores during 20 weeks of follow-up, along with child, parent, and provider satisfaction with PediQUEST feedback.
Feedback did not significantly affect average MSAS, PedsQL4.0, or Sickness score trends. Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional (+8.1; 95% CI, 1.8 to 14.4) and Sickness (−8.2; 95% CI, −14.2 to −2.2) scores. PediQUEST reports were valued by children, parents, and providers and contributed at least sometimes to physician initiation of a psychosocial consult (56%).
Although routine feedback of PROs did not significantly affect the child's symptoms or HRQoL, changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging. Importantly, children, parents, and providers value PRO feedback.
PMCID: PMC3970170  PMID: 24616307
9.  The Parent Perspective: “Being a Good Parent” When Making Critical Decisions in the PICU 
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.
Measurement and Main Results
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.
PMCID: PMC4353698  PMID: 24583502
communication; decision making; family; palliative care; parents; qualitative research
10.  Economic Impact of Advanced Pediatric Cancer on Families 
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.
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).
This is a cross-sectional survey of 86 parents of children with progressive, recurrent or non-responsive cancer at three children’s hospitals. Seventy-one families with complete income data (82%) are included in this analysis.
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 due to 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 non-poor families fell from above to below the 200% FPL.
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.
PMCID: PMC4174345  PMID: 23870843
Pediatric; oncology; palliative care; financial; poverty; disparities
11.  Detection of enthesitis in children with Enthesitis-related arthritis: dolorimeter examination compared to ultrasonography 
To evaluate the distribution of enthesitis and accuracy of physical examination with a dolorimeter for the detection of enthesitis in children, using ultrasound (US) assessment as the reference standard.
We performed a prospective cross-sectional study of 30 enthesitis-related arthritis (ERA) and 30 controls subjects. The following tendon insertion sites were assessed by standardized physical examination with a dolorimeter and US: common extensor on the lateral humerus epicondyle, common flexor on the medial humerus epicondyle, quadriceps at the superior patella, patellar ligament at the inferior patella, Achilles, and plantar fascia at the calcaneus.
Abnormal US findings were detected most commonly at the insertions 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) 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 exam had poor positive predictive value for US-confirmed enthesitis. In comparison to controls, ERA patients reported more pain and had lower pain thresholds at every site, including control sites (P <0.01 for all comparisons). The interrater reliability of dolorimeter exam for detection of enthesitis was low (κ = 0.49 [95% CI 0.33–0.65]).
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 physical examination. Future research regarding the utility of US for identifying enthesitis at JIA diagnosis, accurately predicting disease progression, and guiding therapeutic decisions is warranted.
PMCID: PMC3964147  PMID: 24449586
12.  Psychological distress in parents of children with advanced cancer 
JAMA pediatrics  2013;167(6):537-543.
To describe the prevalence and factors of psychological distress (PD) among parents of children with advanced cancer.
Cohort study embedded within a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study).
Multicenter study conducted at three children’s hospitals (Boston Children’s Hospital, Children’s Hospital of Philadelphia, Seattle Children’s Hospital).
Parents of children with advanced (progressive, recurrent, or refractory) cancer
Outcome Measure
Parental PD, as measured by the Kessler-6 (K6) general psychological distress scale.
86 of 104 parents completed the Survey about Caring for Children with Cancer (SCCC, 83% participation); 81 parents had complete K6 data. Over 50% of parents reported high PD and 16% met criteria for serious PD (compared to US prevalence of 2–3%). Parent perceptions of prognosis, goals of therapy, child symptoms/suffering, and financial hardship were associated with PD. In multivariate analyses, average parent K6 scores were higher among parents who believed their child was suffering highly and who reported great economic hardship. Conversely, PD was significantly lower among parents whose prognostic understanding was aligned with concrete goals of care.
Parenting a child with advanced cancer is strongly associated with high to severe levels of PD. Interventions aimed at aligning prognostic understanding with concrete care goals, and easing child suffering and financial hardship may mitigate parental PD.
PMCID: PMC4263253  PMID: 23545569
Children; Cancer; Parental distress; Illness burden; Resilience
13.  Problems and Hopes Perceived by Mothers, Fathers, and Physicians of Children Receiving Palliative Care 
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.
1) Describe the problems and hopes reported by mothers, fathers, and physicians of children receiving palliative care; 2) examine the observed concordance between participants; 3) examine parental perceived agreement; and 4) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left “hopeless”.
71 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 8 domains. Observed concordance was calculated between parents and between each parent and the physicians.
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).
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.
PMCID: PMC3796017  PMID: 23683168
pediatric palliative care; parental decision making; concordance; agreement
14.  Predictors of Antiemetic Alteration in Pediatric Acute Myeloid Leukemia 
Pediatric blood & cancer  2014;61(10):1798-1805.
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).
Retrospective longitudinal cohort study of 1668 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.
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.
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.
PMCID: PMC4141025  PMID: 24939039
antiemetics; chemotherapy; nausea; supportive care; oncology; pediatrics
15.  Interventions to cultivate physician empathy: a systematic review 
BMC Medical Education  2014;14:219.
Physician empathy is both theoretically and empirically critical to patient health, but research indicates that empathy declines throughout medical school and is lower than ideal among physicians. In this paper, we synthesize the published literature regarding interventions that were quantitatively evaluated to detect changes in empathy among medical students, residents, fellows and physicians.
We systematically searched PubMed, EMBASE, Web of Science and PsychINFO in June of 2014 to identify articles that quantitatively assessed changes in empathy due to interventions among medical students, residents, fellows and physicians.
Of the 1,415 articles identified, 64 met inclusion criteria. We qualitatively synthesized the findings of qualified studies by extracting data for ten study metrics: 1) source population, 2) sample size, 3) control group, 4) random assignment, 5) intervention type, 6) intervention duration, 7) assessment strategy, 8) type of outcome measure, 9) outcome assessment time frame, and 10) whether a statistically significant increase in empathy was reported. Overall, the 64 included studies were characterized by relatively poor research designs, insufficient reporting of intervention procedures, low incidence of patient-report empathy assessment measures, and inadequate evaluations of long-term efficacy. 8 of 10 studies with highly rigorous designs, however, found that targeted interventions did increase empathy.
Physician empathy appears to be an important aspect of patient and physician well-being. Although the current empathy intervention literature is limited by a variety of methodological weaknesses, a sample of high-quality study designs provides initial support for the notion that physician empathy can be enhanced through interventions. Future research should strive to increase the sample of high-quality designs through more randomized, controlled studies with valid measures, explicit reporting of intervention strategies and procedures, and long-term efficacy assessments.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-6920-14-219) contains supplementary material, which is available to authorized users.
PMCID: PMC4201694  PMID: 25315848
Empathy; Compassion emotional intelligence; Undergraduate medical education; Graduate medical education; Continuing medical education; Internship and residency
16.  The Relationship between Mental Health Diagnosis and Treatment with Second-Generation Antipsychotics over Time: A National Study of U.S. Medicaid-Enrolled Children 
Health Services Research  2012;47(5):1836-1860.
To describe the relationship between mental health diagnosis and treatment with antipsychotics among U.S. Medicaid-enrolled children over time.
Data Sources/Study Setting
Medicaid Analytic Extract (MAX) files for 50 states and the District of Columbia from 2002 to 2007.
Study Design
Repeated cross-sectional design. Using logistic regression, outcomes of mental health diagnosis and filled prescriptions for antipsychotics were standardized across demographic and service use characteristics and reported as probabilities across age groups over time.
Data Collection
Center for Medicaid Services data extracted by means of age, ICD-9 codes, service use intensity, and National Drug Classification codes.
Principal Findings
Antipsychotic use increased by 62 percent, reaching 354,000 youth by 2007 (2.4 percent). Although youth with bipolar disorder, schizophrenia, and autism proportionally were more likely to receive antipsychotics, youth with attention deficit hyperactivity disorder (ADHD) and those with three or more mental health diagnoses were the largest consumers of antipsychotics over time; by 2007, youth with ADHD accounted for 50 percent of total antipsychotic use; 1 in 7 antipsychotic users were youth with ADHD as their only diagnosis.
In the context of safety concerns, disproportionate antipsychotic use among youth with nonapproved indications illustrates the need for more generalized efficacy data in pediatric populations.
PMCID: PMC3513608  PMID: 22946905
Antipsychotics; mental health; pediatrics; Medicaid
17.  How Qualitative Studies Can Improve The Quality of Clinical Studies 
PMCID: PMC3767397  PMID: 23783009
18.  Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation 
BMC Pediatrics  2014;14:199.
The pediatric complex chronic conditions (CCC) classification system, developed in 2000, requires revision to accommodate the International Classification of Disease 10th Revision (ICD-10). To update the CCC classification system, we incorporated ICD-9 diagnostic codes that had been either omitted or incorrectly specified in the original system, and then translated between ICD-9 and ICD-10 using General Equivalence Mappings (GEMs). We further reviewed all codes in the ICD-9 and ICD-10 systems to include both diagnostic and procedural codes indicative of technology dependence or organ transplantation. We applied the provisional CCC version 2 (v2) system to death certificate information and 2 databases of health utilization, reviewed the resulting CCC classifications, and corrected any misclassifications. Finally, we evaluated performance of the CCC v2 system by assessing: 1) the stability of the system between ICD-9 and ICD-10 codes using data which included both ICD-9 codes and ICD-10 codes; 2) the year-to-year stability before and after ICD-10 implementation; and 3) the proportions of patients classified as having a CCC in both the v1 and v2 systems.
The CCC v2 classification system consists of diagnostic and procedural codes that incorporate a new neonatal CCC category as well as domains of complexity arising from technology dependence or organ transplantation. CCC v2 demonstrated close comparability between ICD-9 and ICD-10 and did not detect significant discontinuity in temporal trends of death in the United States. Compared to the original system, CCC v2 resulted in a 1.0% absolute (10% relative) increase in the number of patients identified as having a CCC in national hospitalization dataset, and a 0.4% absolute (24% relative) increase in a national emergency department dataset.
The updated CCC v2 system is comprehensive and multidimensional, and provides a necessary update to accommodate widespread implementation of ICD-10.
PMCID: PMC4134331  PMID: 25102958
Pediatrics; Complex chronic conditions; Chronic disease; Classification; International classification of disease codes; Comorbidity; Mortality; Health services research
19.  Prevalence of abuse among young children with femur fractures: a systematic review 
BMC Pediatrics  2014;14:169.
Clinical factors that affect the likelihood of abuse in children with femur fractures have not been well elucidated. Consequently, specifying which children with femur fractures warrant an abuse evaluation is difficult. Therefore the purpose of this study is to estimate the proportion of femur fractures in young children attributable to abuse and to identify demographic, injury and presentation characteristics that affect the probability that femur fractures are secondary to abuse.
We conducted a systematic review of published articles written in English between January 1990 and July 2013 on femur fracture etiology in children less than or equal to 5 years old based on searches in PubMed/MEDLINE and CINAHL databases. Data extraction was based on pre-defined data elements and included study quality indicators. A meta-analysis was not performed due to study population heterogeneity.
Across the 24 studies reviewed, there were a total of 10,717 children less than or equal to 60 months old with femur fractures. Among children less than 12 months old with all types of femur fractures, investigators found abuse rates ranging from 16.7% to 35.2%. Among children 12 months old or greater with femur fractures, abuse rates were lower: from 1.5% - 6.0%. In multiple studies, age less than 12 months, non-ambulatory status, a suspicious history, and the presence of additional injuries were associated with findings of abuse. Diaphyseal fractures were associated with a lower abuse incidence in multiple studies. Fracture side and spiral fracture type, however, were not associated with abuse.
Studies commonly find a high proportion of abuse among children less than 12 months old with femur fractures. The reported trauma history, physical examination findings and radiologic results must be examined for characteristics that increase or decrease the likelihood of abuse determination.
PMCID: PMC4085378  PMID: 24989500
Child abuse; Child maltreatment; Femur fracture; Accident; Trauma
20.  Regoaling: a conceptual model of how parents of children with serious illness change medical care goals 
BMC Palliative Care  2014;13:9.
Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling.
Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care.
The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.
PMCID: PMC3975157  PMID: 24625345
Parental decision making; Pediatric palliative care; Goals; Disengagement; Reengagement; Regoaling; Positive affect; Negative affect; Hopeful thinking; Conceptual model
21.  Putting on a Happy Face: Emotional Expression in Parents of Children with Serious Illness 
Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations where parents typically experience strong emotions.
To explore emotion using both the LIWC and a self-report questionnaire to better understand the relationship between these two measures of emotion in a pediatric care context.
Sixty-nine parents of 47 children who were participants in the Decision Making in Pediatric Palliative Care Study at The Children’s Hospital of Philadelphia took part in this study. Parents completed the Positive and Negative Affect Schedule (PANAS) and a semi-structured interview about their children and experience with medical decision making. The transcribed interviews were analyzed with the Linguistic Inquiry and Word Count (LIWC) program, which yields scores for positive and negative emotional expression. The association between LIWC and PANAS scores was evaluated using multivariate linear regression to adjust for potential confounders.
Parents who used more positive words when speaking about their children’s illnesses and the experience of medical decision making were more likely to report lower levels of positive affect on the PANAS: a standard deviation increase in positive emotional expression was associated with an unadjusted 7.6% decrease in self-reported positive affect (P=0.01) and an adjusted 10.0% decrease in self-reported positive affect (P=0.05) after modeling for potential confounders. A standard deviation increase in negative emotional expression was associated with an adjusted 11.3% increase in self-reported negative affect (P=0.04).
The inverse relationship between parents’ positive emotional expression and their self-reported positive affect should remind both researchers and clinicians to be cognizant of the possibilities for emotional miscues, and consequent miscommunication, in the pediatric care setting.
PMCID: PMC3510342  PMID: 22926092
Communication; caregivers; chronic disease management; emotion; palliative care
22.  Parental Explicit Heuristics in Decision-making for Children With Life-threatening Illnesses 
Pediatrics  2013;131(2):e566-e572.
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.
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.
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.
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.
PMCID: PMC3557409  PMID: 23319524
palliative care; chronic disease; decision-making; hospital care; medical ethics
23.  Parental Hopeful Patterns of Thinking, Emotions, and Pediatric Palliative Care Decisionmaking: A Prospective Cohort Study 
Archives of pediatrics & adolescent medicine  2010;164(9):10.1001/archpediatrics.2010.146.
Test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders.
Prospective cohort study.
Children's hospital and surrounding region.
33 pediatric patients receiving palliative care consult services who did not have LOI orders at time of cohort entry and their 43 parental adults.
Main Exposures
Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories
Main Outcome Measures
Enactment of an LOI order after entry into the cohort.
During the 6 months of observation, 14 patients had (42.4%) an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order [AOR 2.73; 95% CI: 1.04, 7.22]. Increased odds of LOI enactment were associated to non-significant degrees with lower levels of parental positive affect [AOR 0.44; 95% CI: 0.17, 1.12], higher levels of parental negative affect [AOR 2.02; 95% CI: 0.98, 4.16], and parental perceptions of worsening health over time [AOR 1.72; 95% CI: 0.73, 4.07].
For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decisionmaking.
PMCID: PMC3856654  PMID: 20819965
24.  The pediatric rheumatology quality of life scale: validation of the English version in a US cohort of juvenile idiopathic arthritis 
This study aims to validate the English version of the Pediatric Rheumatology Quality of Life Scale (PRQL), a concise Health Related Quality of Life (HRQoL) measure, in a US cohort of children with juvenile idiopathic arthritis (JIA).
The PRQL is a 10-item HRQoL measure with two subscales: physical health and psychological health. The original version of this measure was validated using an Italian-speaking cohort of 472 JIA patients and 796 healthy controls and found to have acceptable psychometric properties. The English language version has not been validated in a US pediatric population. The English PRQL was administered to 161 JIA subjects from a US Rheumatology clinic. We assessed the reliability (internal consistency and test-retest) and validity (convergent, discriminative, and criterion) of the PRQL.
The English PRQL was feasible to administer and demonstrated good psychometric properties. Cronbach alpha (reliability) coefficients ranged from 0.72 to 0.81. Factor analysis yielded the existing subscales. The PRQL total and subscales were found to have moderate correlations with other HRQoL instruments, the Pediatric Quality of Life Inventory (PedsQL) generic core scale and the PedsQL rheumatology. The PRQL discriminated between subjects with active versus inactive disease and was responsive to an improvement or worsening in disease activity over time.
Our results suggest that the English version of the instrument is suitable for use in JIA patients in the US. This tool provides a relatively easy method to integrate at least one patient-reported outcome into routine clinical or research assessment.
PMCID: PMC3830514  PMID: 24206654
Quality of life; Patient-reported outcomes; Pediatric; Juvenile arthritis
25.  Variation in Occult Injury Screening for Children With Suspected Abuse in Selected US Children’s Hospitals 
Pediatrics  2012;130(5):853-860.
To describe variation across selected US children’s hospitals in screening for occult fractures in children <2 years old diagnosed with physical abuse and in infants <1 year old who have injuries associated with a high likelihood of physical abuse.
We performed a retrospective study of children <2 years old with a diagnosis of physical abuse and infants <1 year old with non-motor vehicle crash–associated traumatic brain injuries or femur fractures admitted to 40 hospitals within the Pediatric Hospital Information System database from January 1, 1999, to December 31, 2009. We examined variation among the hospitals in the performance of screening for occult fractures as defined by receipt of skeletal survey or radionuclide bone scan. Marginal standardization implemented with logistic regression analysis was used to examine hospital variation after adjusting for patient demographic characteristics, injury severity, and year of admission.
Screening for occult fractures was performed in 83% of the 10 170 children <2 years old with a diagnosis of physical abuse, 68% of the 9942 infants who had a traumatic brain injury, and 77% of the 2975 infants who had femur fractures. After adjustment for patient characteristics, injury severity, and year of admission, hospitals varied significantly in use of screening for occult fractures in all 3 groups of children.
The observed variation in screening for occult fractures in young victims of physical abuse and infants who have injuries associated with a high likelihood of abuse underscores opportunities to improve the quality of care provided to this vulnerable population.
PMCID: PMC4074645  PMID: 23071208
child abuse; child maltreatment; femur fracture; traumatic brain injury

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