<p><strong>OBJECTIVE: </strong>To assess the performance of previously published high-intensity neurologic impairment (NI) diagnosis codes in identification of hospitalized children with clinical NI.</p>

<p><strong>METHODS: </strong>Retrospective study of 500 randomly selected discharges in 2019 from a freestanding children's hospital. All charts were reviewed for 1) NI discharge diagnosis codes and 2) documentation of clinical NI (a neurologic diagnosis and indication of functional impairment like medical technology). Test statistics of clinical NI were calculated for discharges with and without an NI diagnosis code. A sensitivity analysis varied the threshold for "substantial functional impairment." Secondary analyses evaluated misclassified discharges and a more stringent definition for NI.</p>

<p><strong>RESULTS: </strong>Diagnosis codes identified clinically documented NI with 88.1% (95% CI: 84.7, 91) specificity, and 79.4% (95% CI: 67.3, 88.5) sensitivity; NPV was 96.7% (95% CI: 94.8, 98.0), and PPV was 49% (95% CI: 42, 56.1). Including children with milder functional impairment (lower threshold) resulted in NPV of 95.7% and PPV of 77.5%. Restricting to children with more severe functional impairment (higher threshold) resulted in NPV of 98.2% and PPV of 44.1%. Misclassification was primarily due to inclusion of children without functional impairments. A more stringent NI definition including diagnosis codes for NI and feeding tubes had a specificity of 98.4% (95% CI: 96.7-99.3) and sensitivity of 28.6% (19.4-41.3).</p>

<p><strong>CONCLUSIONS: </strong>All scenarios evaluated demonstrated high NPV and low-to-moderate PPV of the diagnostic code list. To maximize clinical utility, NI diagnosis codes should be used with strategies to mitigate the risk of misclassification.</p>

<p>Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.</p>

<p><strong>BACKGROUND AND OBJECTIVE: </strong>Trisomy 13 and trisomy 18 are generally considered fatal anomalies, with a majority of infants dying in the first year after birth. The inpatient hospital care that these patients receive has not been adequately described. This study characterized inpatient hospitalizations of children with trisomy 13 and trisomy 18 in the United States, including number and types of procedures performed.</p>

<p><strong>METHODS: </strong>Retrospective repeated cross-sectional assessment of hospitalization data from the nationally representative US Kids' Inpatient Database, for the years 1997, 2000, 2003, 2006, and 2009. Included hospitalizations were of patients aged 0 to 20 years with a diagnosis of trisomy 13 or trisomy 18.</p>

<p><strong>RESULTS: </strong>The number of hospitalizations for each trisomy type ranged from 846 to 907 per year for trisomy 13 (P = .77 for temporal trend) and 1036 to 1616 per year for trisomy 18 (P &lt; .001 for temporal trend). Over one-third (36%) of the hospitalizations were of patients older than 1 year of age. Patients underwent a total of 2765 major therapeutic procedures, including creation of esophageal sphincter (6% of hospitalizations; mean age 23 months), repair of atrial and ventricular septal defects (4%; mean age 9 months), and procedures on tendons (4%; mean age 8 years).</p>

<p><strong>CONCLUSIONS: </strong>Children with trisomy 13 and trisomy 18 receive significant inpatient hospital care. Despite the conventional understanding of these syndromes as lethal, a substantial number of children are living longer than 1 year and undergoing medical and surgical procedures as part of their treatment.</p>

<p><strong>BACKGROUND: </strong>Guidelines help inform standardization of care for quality improvement (QI). The Pediatric Research in Inpatient Settings network published a prioritization list of inpatient conditions with high prevalence, cost, and variation in resource utilization across children's hospitals. The methodological quality of guidelines for priority conditions is unknown.</p>

<p><strong>OBJECTIVE: </strong>To rate the methodological quality of national guidelines for 20 priority pediatric inpatient conditions.</p>

<p><strong>DESIGN: </strong>We searched sources including PubMed for national guidelines published from 2002 to 2012. Guidelines specific to 1 organism, test or treatment, or institution were excluded. Guidelines were rated by 2 raters using a validated tool (Appraisal of Guidelines for Research and Evaluation) with an overall rating on a 7-point scale (7 = the highest). Inter-rater reliability was measured with a weighted kappa coefficient.</p>

<p><strong>RESULTS: </strong>Seventeen guidelines met inclusion criteria for 13 conditions; 7 conditions yielded no relevant national guidelines. The highest methodological-quality guidelines were for asthma, tonsillectomy, and bronchiolitis (mean overall rating 7, 6.5, and 6.5, respectively); the lowest were for sickle cell disease (2 guidelines) and dental caries (mean overall rating 4, 3.5, and 3, respectively). The overall weighted kappa was 0.83 (95% confidence interval 0.78-0.87).</p>

<p><strong>CONCLUSIONS: </strong>We identified a group of moderate to high methodological-quality national guidelines for priority pediatric inpatient conditions. Hospitals should consider these guidelines to inform QI initiatives.</p>