Creation and implementation of a REDCap database demonstrates engagement and impact for a hospital-based center for nursing research and evidence-based practice.

Demonstrating impact is essential for hospital-based centers for pediatric nursing research and evidence-based practice. To meet this aim, the Center for Pediatric Nursing Research & Evidence-Based Practice at Children's Hospital of Philadelphia created a Research Electronic Data Capture (REDCap) database as a project engagement tracker to (1) capture all requests for consultation, and (2) summarize the Center's multi-professional consultants' engagement in diverse projects across our large pediatric health system. We implemented our REDCap project engagement tracker six years ago and continue to utilize it as a living database. Customized reports allow us to effectively manage our daily operations and communicate our reach and value to stakeholders internal and external to our organization. With REDCap's flexibility and ease of use, this project engagement tracker can be easily shared with like organizations. And with strong partnerships, we hope to see the development of common metrics to communicate the impact of centers of nursing inquiry on a national scale.

Triage Accuracy in Pediatrics Using the Emergency Severity Index.

INTRODUCTION: Although the Emergency Severity Index is the most widely used tool in the United States to prioritize care for patients who seek emergency care, including children, there are significant deficiencies in the tool's performance. Inaccurate triage has been associated with delayed treatment, unnecessary diagnostic testing, and bias in clinical care. We evaluated the accuracy of the Emergency Severity Index to stratify patient priority based on predicted resource utilization in pediatric emergency department patients and identified covariates influencing performance. METHODS: This cross-sectional, retrospective study used a data platform that links clinical and research data sets from a single freestanding pediatric hospital in the United States. Chi-square analysis was used to describes rates of over- and undertriage. Mixed effects ordinal logistic regression identified associations between Emergency Severity Index categories assigned at triage and key emergency department resources using discrete data elements and natural language processing of text notes. RESULTS: We analyzed 304,422 emergency department visits by 153,984 unique individuals in the final analysis; 80% of visits were triaged as lower acuity Emergency Severity Index levels 3 to 5, with the most common level being Emergency Severity Index 4 (43%). Emergency department visits scored Emergency Severity Index levels 3 and 4 were triaged accurately 46% and 38%, respectively. We noted racial differences in overall triage accuracy. DISCUSSION: Although the plurality of patients was scored as Emergency Severity Index 4, 50% were mistriaged, and there were disparities based on race indicating Emergency Severity Index mistriages pediatric patients. Further study is needed to elucidate the application of the Emergency Severity Indices in pediatrics using a multicenter emergency department population with diverse clinical and demographic characteristics.

Advancing Opportunities for Clinical Inquiry and Professional Development During a Pandemic.

A notable challenge faced by pediatric hospitals during the COVID-19 pandemic included the need to decrease inpatient census and socially distant non-clinical hospital employees to alternative work arrangements. In doing so, nurses and other clinical care services employees were reassigned to new roles, while others continue to work from home. This paper aims to describe how during the COVID-19 pandemic, a pediatric hospital-based center for nursing research and evidence-based practice used this opportunity to virtually engage staff across the department in topics of clinical inquiry through education sessions, office hours, and individualized/team consultation. Therefore, elevating and increasing the presence of nursing research and evidence-based practice while providing opportunities for the continued professional development of nurses, respiratory therapists, clinical dietitians, child life specialists and employees in neurodiagnostics.

Nursing Research Priorities in the Pediatric Emergency Care Applied Research Network (PECARN): Reaching Consensus Through the Delphi Method.

INTRODUCTION: Pediatric emergency nurses who are directly involved in clinical care are in key positions to identify the needs and concerns of patients and their families. The 2010 Institute of Medicine report on the future of nursing supports the active participation of nurses in the design and implementation of solutions to improve health outcomes. Although prior efforts have assessed the need for research education within the Pediatric Emergency Care Applied Research Network (PECARN), no systematic efforts have assessed nursing priorities for research in the pediatric ED setting. METHODS: The Delphi technique was used to reach consensus among emergency nurses in the PECARN network regarding research priorities for pediatric emergency care. The Delphi technique uses an iterative process by offering multiple rounds of data collection. Participants had the opportunity to provide feedback during each round of data collection with the goal of reaching consensus about clinical and workforce priorities. RESULTS: A total of 131 nurses participated in all 3 rounds of the survey. The participants represented the majority of the PECARN sites and all 4 regions of the United States. Through consensus 10 clinical and 8 workforce priorities were identified. DISCUSSION: The PECARN network provided an infrastructure to gain expert consensus from nurses on the most current priories that researchers should focus their efforts and resources. The results of the study will help inform further nursing research studies (for PECARN and otherwise) that address patient care and nursing practice issues for pediatric ED patients.

Pain characteristics and age-related pain trajectories in infants and young children with sickle cell disease.

BACKGROUND: The epidemiology of painful episodes in infants and younger children with SCD has not been well studied, particularly for pain managed at home. PROCEDURE: SCD infants identified by newborn screening were enrolled in a longitudinal observational study of pain symptoms requiring parents to report the presence or absence of pain daily. When sickle cell related-pain events occurred, pain occurrence, location, associated symptoms and the treatment provided also were reported. RESULTS: 103 children were enrolled at a median age of 7.2 months; 50 had an SS genotype, 32 SC, 6 SB(0)thalassemia, and 15 SB(+)thalassemia. Parents/guardians reported for a median of 3.8 years (range 0.3-7.6 years) assessing pain for a total of 141,197 days, excluding any period of recurrent transfusions, with an additional 28,079 days of missing data (16%). Children had pain reported on 2,288 days (1.6%), representing 768 distinct episodes of pain, of which 108 required hospitalizations (14%). Pain locations and symptoms consistent with dactylitis were most prevalent (80%) in the 0-12 month age group, and became progressively less prevalent thereafter. Group-based trajectory modeling of pain episode or pain day frequency identified several trajectory groups with progressively older ages of peak pain frequency, which included 40-45% of SS/SB(0)thalassemia and 10-12% of SC/SB(+)thalassemia children. CONCLUSIONS: Pain is relatively infrequent in SCD infants and young children and commonly managed at home. Analyses of longitudinal pain trajectories suggest several different pain trajectories, differing in their frequency, age of onset, and age at peak pain frequency with clinical implications for hydroxyurea management.

Sedation Practices of Neonates Receiving Extracorporeal Membrane Oxygenation.

Neonatal sedation practices during extracorporeal membrane oxygenation (ECMO) are not well described and no universal guidelines exist. Current literature describes types of medications used in adult and pediatric ECMO patients, but to our knowledge no data is published on neonatal specific median daily dose requirements or descriptions of sedation practices. The objective of this study is to examine the types and median doses of sedation utilized and to describe sedation practices for neonatal patients requiring ECMO support. This study was a descriptive, retrospective analysis of sedation practices in a single center newborn/infant intensive care unit (N/IICU) from 2012 to 2016. Subjects included all neonates who required ECMO support in the N/IICU for >24 hours. Data were collected from 87 patients and showed the median daily dose of opioids converted to intravenous morphine equivalents was 1.2, 2.0, and 3.4 mg/kg on ECMO days 1, 7, and 14, respectively. The most commonly used continuous medication infusions included morphine, midazolam, and hydromorphone. Dexmedetomidine was used in eight patients and ketamine in two patients. Doses of opioids and sedatives typically escalated over time. Pain scores did not correlate with sedation or analgesic administrations.

Hypoxaemia in sickle cell disease: biomarker modulation and relevance to pathophysiology.

BACKGROUND: Nocturnal oxyhaemoglobin desaturation might have a role in CNS complications related to sickle cell disease, and rates of painful crises. We attempted to examine the biological relations, and describe the haematological risk factors for oxyhaemoglobin desaturation. METHODS: The study population included children with sickle cell disease and controls. Cellular activation was assessed by measurement of soluble vascular cell adhesion molecule 1, P-selectin, L-selectin, and leukotriene B4. Erythrocyte-endothelial adhesion and routine haematological variables were assessed. Oxygen saturation (SaO2) was measured by pulse oximetry while children were awake and asleep. Children with a mean sleeping SaO2 of < or =93% were identified as hypoxaemic. Children were divided into four groups: controls (ten children), HbSC (nine, all normoxic), HbSS normoxic (13), and HbSS hypoxaemic (15). FINDINGS: Among haematological variables, sleeping SaO2 correlated only with packed-cell volume (r=0.7; p<0.0001). Inverse relations were noted between sleeping SaO2 and adhesion (-0.45; p<0.01), and markers of white-cell (-0.51; p<0.01), platelet (-0.61; p<0.001), and endothelial activation (-0.46; p<0.01). In the HbSS group who had sleeping hypoxaemia, waking SaO2 measurements showed continuing hypoxaemia, with similar correlation between SaO2 and cell activation markers. INTERPRETATION: Our adhesion-related findings suggest a potential mechanism for the increased occurrence of clinical vaso-occlusive crises in individuals with sickle cell disease who have oxyhaemoglobin desaturation. Release of cellular mediators in hypoxaemia, and the relation between anaemia and oxyhaemoglobin desaturation, suggest that risk factors for stroke, including anaemia, might have a role in CNS-vasculopathy through hypoxia-mediated pathways. Further more, hypoxaemia in the older child also occurs during the day; such mild untreated hypoxia could lead to an increased risk of vaso-occlusive episodes.

Characteristics of pain managed at home in children and adolescents with sickle cell disease by using diary self-reports.

Pain can begin in the first year of life for individuals with sickle cell disease (SCD) and continue in an unpredictably recurrent manner throughout their life span. Sickle vaso-occlusive pain (sickle pain) can also occur simultaneously with pain of other origins, complicating both assessment and management. Aims of this research were to describe the reliability and validity of a daily diary for data collection with children and adolescents with SCD and to describe characteristics of vaso-occlusive sickle pain episodes (VOE) and other pain reported by children and adolescents with SCD along with home pain management strategies. Thirty-nine children and adolescents (mean age, 10.9 +/- 3.6 years) completed diaries twice daily at home for up to 3 years (mean, 417.9 +/- 272.2 diary days) with excellent compliance. Sickle pain alone was reported on 8.4% of days (n = 1515 days), whereas other pain occurred on 2.7% of days (n = 490) and both sickle pain and other pain on 5.7% (n = 1041 days). Other pain only episodes were shorter and involved fewer sites than sickle pain only episodes. Sickle pain occurred in the extremities and hips, whereas most other pain occurred in the head-neck area. Analgesic medication was taken on 85% of days of sickle pain, whereas analgesics were taken on only 60% of days with other pain. The diary used in this study is a valid and reliable self-report tool. The use of home diaries will improve the understanding of sickle pain and its management and assist in identifying other pain syndromes that may require alternative management.

Caregiver report of pain in infants and toddlers with sickle cell disease: reliability and validity of a daily diary.

Pain is a hallmark sign of sickle cell disease (SCD) with more than 80% of vaso-occlusive episodes managed at home. This study explored the pyschometric properties of a daily pain and symptom diary and compliance of caregiver report in young children with SCD during a 1- to 2-year period. Compliance for completing diary entries for the first year with 16 caregivers was 90.6% and 86.2% with 19 respondents for the first 2 years. A Cronbach alpha of 0.86 was calculated for 12 items in the diary during a period of 1,450 diary days. Test-retest reliability analysis yielded 99.8% agreement between written entry and stated data entry. Interitem correlations for the 16 respondents ranged from 0.11 to 0.89 (mean, 0.52). Scale reliability estimates were quite strong, ranging from 0.50 to 0.99 (mean, 0.85). Construct validity was supported with significant relationships between caregiver report of giving medications when SCD pain was identified (chi-square = 98.0, P < .0001) and providing other help to relieve SCD pain (chi-square = 8.36, P < .004). The results provide evidence that the Infant/Toddler Diary is a reliable, valid measure of pain and illness report by caregivers of young children with SCD.

Home management of pain in sickle cell disease: a daily diary study in children and adolescents.

PURPOSE: To determine the incidence of pain and the types of home pain management techniques used by children and adolescents with sickle cell disease (SCD) and their caregivers. PATIENTS AND METHODS: Thirty-seven children and adolescents (ages 6-21 years) with SCD used a self-report pain diary twice daily to report their pain experience and its management for 6 months to 3 years. A total of 18,377 diary days representing 514 distinct pain episodes were analyzed. RESULTS: Pain related to SCD was reported on 2592 days and 2326 nights, with analgesic medication taken on 88% of days and 76% of nights. A single oral analgesic was used on 58% of these days. On the remaining days, multiple analgesics were used in a variety of combinations. More frequent analgesic dosing was reported on days with more intense pain. Pain relief was substantially better for analgesic combinations than for single analgesics, particularly for moderate to severe pain. CONCLUSIONS: Pain went untreated on a modest number of days, and many patients relied on relatively ineffective single analgesics. Other patients and families appropriately used potent analgesic combinations in a time-contingent and intensity-dependent pattern. This study suggests that recurrent acute pain from SCD can be successfully managed at home with appropriate training and supervision, and suggests several areas for intervention to improve patient outcomes.

Physical and cognitive-behavioral activities used in the home management of sickle pain: a daily diary study in children and adolescents.

BACKGROUND: There is little information documenting the use of cognitive-behavioral and physical pain relieving activities by children and adolescents for management of pain related to sickle cell disease (SCD). METHODS: Thirty-seven subjects (aged 6-21 years) used a daily self-report pain diary for 6 months to 3 years to report their home pain experience and its pharmacologic and non-pharmacologic management. RESULTS: A total of 514 vaso-occlusive pain episodes (2,592 days) were reported. Cognitive-behavioral or physical pain management activities were used alone on 7.5% of these pain days, and with analgesics on 77%. Female gender (P = 0.003) and increasing pain intensity (P = 0.04) were associated with an increased number of activities used. Increasing pain intensity was also associated with usage of several specific activities. CONCLUSIONS: Patients and families frequently used cognitive-behavioral and physical activities in addition to oral analgesics to treat sickle cell-related pain at home, and may benefit from additional training and support.

Vaso-occlusion in children with sickle cell disease: clinical characteristics and biologic correlates.

Vaso-occlusive pain is a frequent manifestation of sickle cell disease, but most clinical studies have documented only those pain episodes for which patients seek acute care or require hospitalization. Based on limited previous studies, the authors suggest that pain episodes managed at home are more frequent then those resulting in acute care management but likely share a common pathophysiology. The authors determined the characteristics of vaso-occlusive pain managed at home in 30 subjects (ages 6-19 years) using a self-report diary daily for 6 months. A total of 175 pain episodes were reported in 4,885 days, with 51% lasting 1 day or less. Severe pain, rated as 7 to 10 on a 10-point scale, was reported on 12% of pain days, but most pain was of mild to moderate intensity. A combination of baseline hematologic parameters and biomarkers assessing erythrocyte/endothelial cell adhesion, including hematocrit, fetal hemoglobin, and adhesion ratio, were statistically significant predictors of pain frequency in statistical analyses. Given the overlap in clinical features and predictive hematologic parameters of home-managed and acute care-managed pain, both likely represent a continuum of frequency and severity rather than distinct clinical entities. The higher frequency of these home-managed episodes suggests their potential utility as additional outcome measures in studies of vaso-occlusive pain.