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Pediatric hospice is a new terminology in current medical literature. Implementation of pediatric hospice care in oncology setting is a vast but subspecialized field of research and practice. However, it is accompanied by substantial uncertainties, shortages and unexplored sections. The lack of globally established definitions, principles, and guidelines in this field has adversely impacted the quality of end-of-life experiences for children with hospice needs worldwide. To address this gap, we conducted a comprehensive review of scientific literature, extracting and compiling the available but sparse data on pediatric oncology hospice from the PubMed database. Our systematic approach led to development of a well-organized structure introducing the foundational elements, highlighting complications, and uncovering hidden gaps in this critical area. This structured framework comprises nine major categories including general ideology, population specifications, role of parents and family, psychosocial issues, financial complications, service locations, involved specialties, regulations, and quality improvement. This platform can serve as a valuable resource in establishing a scientifically reliable foundation for future experiments and practices in pediatric oncology hospice., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Mobile Clinical Decision Support Systems (CDSSs) represent an increasingly utilized technology to promote clinical guideline use. We sought to explore clinician guideline use and access preferences during implementation of a mobile guideline app at a free-standing children's hospital integrating 23 guidelines. Surveys included demographic variables and access preferences among anonymous onboarded clinicians in January 2022. Response rate was 21.8% (57/261) among onboarded users, mostly attending (59.6%) and resident/fellow physicians (21.1%) in inpatient (42.1%) and emergency department (31.6%) settings. Onboarded users accessed guidelines on over half of shifts (68.4%) and quickly (80.7%, <1 minute). Overall, most users reported favorable patterns for adoption of mobile CDSSs as useful adjuncts to existing formats. Users reported more ease of access and frequent guideline usage, particularly for younger clinicians. Guidelines related to antibiotic decision-making or newer disease processes were most useful. Further study is needed on electronic health record incorporation, adherence, and patient outcomes., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr Hester became an advisor to avoMD in April 2022. The remaining authors declare that they have no conflicts of interests in the research.

In this study, we aimed to create a novel tool to assist providers at 2 Chicago-area Federally Qualified Health Centers in giving guidance on early cognitive and language development during well-child visits. We utilized a human-centered design (HCD) process to address specific barriers to providing this guidance and create a tool shaped by the needs of providers and parents. Phase I involved collaborative prototype design; phase II involved implementation, feedback gathering, and responsive iterations of the tool; and phase III involved a collective review of the HCD process. The final version of the tool was a concise, colorful, and parent-accessible "Brain Building Guide" intended for interactive provider and parent use. It featured personalized information about parental knowledge and suggested areas for guidance. It was both satisfactory to stakeholders and efficacious in improving parental knowledge immediately post-visit and 1 month out. It should be further evaluated in a randomized controlled trial.

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE ® ) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE ® ( n = 54 dyads) or control ( n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE ® intervention than control (β = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (β = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (β = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE ® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.

Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored pediatric health care providers' perceptions of legacy at an academic medical center to ensure that future legacy interventions are evidence-informed and theoretically grounded. An electronic survey featuring three open-ended questions and two multiple-choice questions with an option for free text response was completed by 172 medical and psychosocial health care providers. Analysis yielded four themes: (1) legacy is intergenerational, enduring, and typically associated with end-of-life; (2) legacies articulate the impacts on others for which one is known and remembered; (3) legacies can be expressed through tangible items or intangible qualities; and (4) legacies are informed and generated by family relationships and work experiences. By understanding legacy as a personally and professionally contextualized experience, health care providers can better assess and meet the legacy needs of hospitalized pediatric patients and families.

The American Academy of Pediatrics provides guidance for pediatric primary care providers to promote healthy weight during childhood. Screening questions on diet and activity habits can help provider assessment and assist counseling for targeted behavior change. We implemented the parent completed, 10-item 5210 Healthy Habits Questionnaire (Ages 2-9 year) in our primary care practice serving low-income minority children with high rates of overweight and obesity. Adherence to the intervention protocol was high, and providers found the content and method of assessment useful for their counseling of individual patients. The aggregate Healthy Habits Questionnaire data provided a snapshot of the health habits in our local clinic population of children, prompting greater awareness for providers and informing their patient care.

Central venous access devices (CVADs) are the standard of care in pediatric oncology. Occlusion is a common complication that can lead to delays in therapy, readmission, and CVAD removal and reinsertion. Early treatment of partial occlusions using a standardized protocol may restore patency and increase life span of CVADs. The objective of this study was to develop and evaluate a nurse-led protocol to manage partial CVAD occlusions in pediatric oncology and autologous bone marrow transplant patients. The protocol enabled nurses to manage partially occluded CVADs by administering thrombolytic therapy following an algorithm and patient-specific standing order. The primary outcome was time from recognition of the partial occlusion to instillation of a thrombolytic. Secondary outcomes were thrombolytic dwell time, number of complete occlusions, and CVAD life span. We used a quasi-experimental, after-only, nonequivalent control group design to compare patients not exposed (retrospective cohort, n = 137) and patients exposed (prospective cohort, n = 101) to the nurse-led protocol. Mann-Whitney U tests were used to compare time to treatment, dwell time, and CVAD life span between cohorts, and χ 2 was used to compare the proportion of occlusions classified as complete. Time to treatment was significantly lower in the prospective cohort ( M = 99.9 minutes) versus the retrospective cohort ( M = 483.7 minutes), U = 1366.50, p < .01, as was thrombolytic dwell time, U = 282.50, p < .01. Proportion of complete occlusions and CVAD life span did not differ between cohorts. The nurse-led protocol was effective to manage partial CVAD occlusions in pediatric oncology patients.

Background: Antineoplastic-induced nausea and vomiting (AINV) is a treatment-related issue that can have significant negative influences on the cancer patient's quality of life. Assessment of nausea is challenging in children as few studies include the perception of nausea as an outcome, and the severity is rarely evaluated with the use of a validated instrument. We describe our experience of integrating an AINV tool into patient care at the Alberta Children's Hospital. Procedure: The Pediatric Nausea Assessment Tool (PeNAT) was adapted to create a standardized tool that could be used by the clinical pharmacists for AINV assessment. From February to August 2017, 74 patients receiving 217 cycles of highly or moderately emetogenic chemotherapy (HEC or MEC) were eligible to use the AINV tool. Patients that completed the AINV tool were contacted to complete a satisfaction survey., Results: AINV tool uptake was low: 47 (22%) eligible chemotherapy cycles utilized the tool (24 (32%) and 23 (16%) cycles of HEC and MEC, respectively, ( p  < 0.01)). Ifosfamide-containing cycles received the highest nausea ratings, with nausea severity correlated with agent emetogenicity. Mean nausea rating was 2.07 versus 1.76 for patients receiving HEC or MEC, respectively. Clinical pharmacists performed 1.24 AINV interventions per day. Patient satisfaction with AINV care overall was high; however, 51% of patients indicated that the tool led to no changes in nausea symptoms., Conclusions: AINV tool uptake was low with limited value in improving outcomes. Incorporation of nausea assessment into the electronic health record and potential use of a mobile application may improve uptake.

Background: There is no consensus for the length of prophylactic antibiotics after delayed chest closure (DCC) postcardiac surgery in pediatrics. In September 2014, our institution's pediatric cardiac intensive care unit changed the policy on length of prophylactic antibiotics after DCC from 5 days (control) to 2 days (study group). The objective of the study was to determine whether a 2-day course of antibiotics is as effective as a 5-day course in preventing blood stream and sternal wound infections in pediatric DCC., Methods: Retrospective and prospective study. Primary end points included incidence of sternal wound infections and positive sternal imaging for infection. Surrogate markers of infection were collected at 4 time points., Results: During the study period, 139 patients had DCC postcardiac surgery of which 110 patients were included for analysis, 54 patients in the control and 56 in the study group. There was no difference in total number of positive wound cultures/chest computed tomography (CT) findings (4/54 [7.5%] control vs 5/56 [8.9%] study group, P = .3), positive blood cultures ( P = .586), median postsurgical length of stay ( P = .4), or readmissions within 30 days postsurgery ( P = .6). All secondary end points were similar in both groups except peak heart rate between weeks 2 and 4 ( P = .041)., Conclusion: Two days of prophylactic antibiotics is not inferior to 5 days of prophylactic antibiotics after DCC following pediatric cardiac surgery.

Somatic symptom disorder is a complex condition linking distress in the mind to physical distress in the body. However, in addition to the disorder itself, experienced clinicians know that children and youth frequently experience somatizing symptoms. With an increasing prevalence of anxiety in the pediatric population, symptoms attributable to process of "somatizing" are common, and early identification and rapport building to address the root causes of a child's distress are critical for a good outcome. In the acute care setting, clinicians are often reluctant to make the diagnosis of somatization. Part of the challenge is encouraging clinicians to see that somatization is not a "diagnosis of exclusion." We want to encourage clinicians to routinely consider risk factors for somatization in their histories, actively discuss the mind-body connection with patients and families, and include somatization in a carefully considered differential diagnosis. The more we can break down the siloing of physical from mental health, the better we will serve our patients.

As a child and adolescent neuropsychology service based within a paediatric psychology team at a large teaching hospital, we meet children and young people across the age range who experience cognitive impairment as a result of long-term health conditions or traumatic brain injury. We have a remit of providing a neuropsychological assessment and report. Typically, a neuropsychology report includes recommendations for home and for school. However, research suggests that their uptake is variable and depends on the understanding and resources of families and school systems. As a stretched service, we have very limited capacity to follow the work through to the extent that we might like. Therefore, we are always seeking effective ways to support the ongoing adaptation and implementation of the assessment recommendations in the child's various day-to-day contexts. We address both the cognitive functioning and the psychological well-being of the child as a unified whole. Drawing on systemic ideas influences our communications with children, families, schools and the medical teams in ways which help bridge the gap between hospital-based assessment and everyday life. This article describes how we are integrating our systemic and neurodevelopmental perspectives to make the assessment and the findings a meaningful intervention in themselves. We consider ways of sharing neuropsychology findings which promote the child's psychological well-being in their different contexts: hospital, home, school, community and culture.

The original pediatric complex chronic conditions (CCC) classification system developed in 2000/2001 is the gold standard in classifying children with life-limiting illnesses. It was significantly modified in 2014; yet the two systems have not been evaluated. The objective of this study was to evaluate the agreement and validity of the original versus the modified CCC classification systems. Healthcare Cost and Utilization Project (HCUP) Kids' Inpatient Database (KID) data from 2012 was used with a sample of infant decedents less than 1 years. The agreement (i.e., Cohen's Kappa Statistic) and validity (i.e., sensitivity, specificity, and positive predictive value [PPV]) statistics were calculated. Among the 10,175 infants that were classified, the modified system performed well in identifying infants who had a CCC, and it captured infants that the original classification did not. The modified system represents an improvement over the original, but additional testing is warranted.

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear., Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness., Design and Methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness., Ethical Considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences., Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society., Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness., Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.

Purpose: To describe the development and content validation of measures to assess the psychoeducational needs of children, adolescents/young adults (AYAs), and their parents at the end of successful treatment for cancer. Method : Professional experts, which included pediatric oncology nurses and advanced practice registered nurses, conducted a systematic review of the literature to determine specific end of treatment (EOT) needs of children and AYAs with cancer and their parents and evaluate available tools to measure these needs. From this review, two EOT questionnaires were initially developed. Oncology Family Advisory Board (FAB) members served as experiential experts in refining and validating these questionnaires. FAB members participated in a content validation process, rating questionnaires online, and subsequently participating in a focus group to establish content validity ( n = 6). Results : Three EOT questionnaires were ultimately developed. The Child/AYA questionnaire was divided into two separate measures for developmental and literacy considerations. The Parent/Caregiver and the AYA questionnaires each contain 38 items with a content validity index score of 100%. The Child questionnaire contains 37 items with a content validity index score of 100%. Conclusion : Content validity was established for three EOT questionnaires, each of which has the potential to elicit information regarding needs and potential gaps in services perceived by childhood cancer survivors and their parents. Further psychometric testing is needed to determine stability (test-retest reliability) and construct validity of the questionnaires.

The Adult Congenital and Pediatric Cardiology (ACPC) Section of the American College of Cardiology sought to develop quality indicators/metrics for ambulatory pediatric cardiology practice. The objective of this study was to report the creation of metrics for patients with Kawasaki disease. Over a period of 5 months, 12 pediatric cardiologists developed 24 quality metrics based on the most relevant statements, guidelines, and research studies pertaining to Kawasaki disease. Of the 24 metrics, the 8 metrics deemed the most important, feasible, and valid were sent on to the ACPC for consideration. Seven of the 8 metrics were approved using the RAND method by an expert panel. All 7 metrics approved by the ACPC council were accepted by ACPC membership after an "open comments" process. They have been disseminated to the pediatric cardiology community for implementation by the ACPC Quality Network.

Repeated invasive and painful procedures are often necessary components of pediatric cancer treatment. Adequate pain control during procedures is essential; however, procedure-related pain may be underestimated and undertreated. Currently, there is not a standard approach for the appropriate level of sedation to manage procedure-related pain in children with cancer. A team was assembled to review the evidence and develop recommendations to determine the appropriate level of sedation necessary for pain control in patients undergoing pediatric oncology procedures. After a systematic search of the literature, 15 research-based articles were synthesized and critically appraised. A recommendation was made related to the level of sedation utilized for bone marrow aspirates and bone marrow biopsies. There is a need for further research related to the necessary level of sedation for patients undergoing pediatric oncology procedures.

We performed a quality improvement intervention to increase universal lipid screening in well-child visits (age 9 to 11 years): 12-month preintervention; phase 1 (8 months) with provider education, group monthly chart review with feedback, and electronic health record cues to order lipids; and phase 2 (16 months) with electronic health record cues and examination room phlebotomy. Outcomes were compared with clinics having no intervention. In phase 1, immediate treatment effect on the regression line for provider behavior (proportion of visits with lipids ordered) showed 34% increase in intervention and 7% decrease in comparison clinics; patient behavior (phlebotomy completed) showed 19% increase in intervention and 5% decrease in comparison clinics. At the beginning of phase 2, the intervention clinic had average 44% orders entered and 33% phlebotomy completed per well-child visit, and these proportions were maintained. Provider education and chart review with feedback were associated with the greatest gains in outcomes.

Children undergoing cancer treatment are less active than healthy peers. Inactivity persists into survivorship, negatively influencing health and quality of life. Fatigue is one of the most prevalent symptoms during treatment yet children with increased physical activity (PA) have less fatigue. This pilot study evaluated the impact of coaching on PA and fatigue in children undergoing cancer treatment delivered by pediatric oncology nurse practitioners (NPs) during routine clinic visits. NPs used motivational interviewing during clinic visits to coach children and their families on strategies to increase PA at home. Self-report measures of PA and fatigue were completed at treatment months 2, 4, and 6. PA was also measured using actigraphy. Among 30 children ages 6 to 18 years, 7 had acute lymphoblastic leukemia (ALL), 11 had lymphoma, and 12 had solid tumors. Patterns of fatigue were different by disease group with trends to fatigue decreasing during treatment in the patients with ALL ( p = .09) and lymphoma ( p = .13) but increasing in those with solid tumors ( p = .06). Self-report PA was unchanged. Actigraph measurements remained stable for the group. NPs reported time challenges in implementing coaching during the clinic visit and in providing coaching continuity. The intensive, repeating chemotherapy cycles in solid tumor treatment may contribute to increasing fatigue. Treatment intensity decreases during ALL and lymphoma treatment, which may allow for improvement in fatigue. Inactivity persisted during treatment but did not progress. Future research is needed to evaluate more "dose-intensive" PA interventions in larger samples of specific disease groups.

Central venous access devices (CVADs) are vital to enable treatment for children with cancer and other complex health conditions. However, complications effecting the CVAD wound are commonly reported. This study aimed to identify the incidence and prevalence of CVAD-associated skin complications current management, and characteristics associated with complication development, in pediatrics. A prospective observational study performed across medical, oncology, and hematology departments at a tertiary pediatric hospital in Australia, between April and July 2017. Children admitted with CVADs were assessed twice weekly for CVAD-associated skin complications and associated signs and symptoms. The data were analyzed using descriptive statistics (i.e., proportions, frequency) and time-to-event multivariable regression (i.e., hazard ratios [HRs]). Two hundred and seventy-one CVADs were reviewed over 43,787 catheter days, with over one eighth of participants (14%; n = 37) having a CVAD-associated skin complication during their admission (0.95 per 1,000 catheter days, 95% confidence interval [CI; 0.61, 1.17]), most commonly contact dermatitis (11%; n = 29; 0.72 per 1,000 catheter days 95% CI [0.50, 1.04]). Within biweekly checks the median point prevalence of complications varied between 0.4% and 11% and clinical management was wide-ranging. A primary diagnosis of oncology (HR 2.89, 95% CI [1.10, 7.62]) or medical/surgical (HR 2.55, 95% CI [1.04, 6.22]) conditions; plain, nonbordered polyurethane dressings (HR 4.92, 95% CI [2.00, 12.13]); and poor dressing integrity (HR 2.64, 95% CI [1.18, 5.92]) were significantly associated with contact dermatitis. In conclusion, substantial numbers of pediatric patients experience CVAD-associated skin complications, and innovations are necessary to identify, prevent, and treat these health care-associated injuries.

Children with cancer often undergo treatments that render them severely immunocompromised. Side effects of treatment place them at risk for developing oral mucositis (OM), which can potentially lead to infection and bacteremia. Staff nurses on an inpatient pediatric oncology unit noted inconsistent daily oral hygiene practices despite assessing OM consistently. Basic oral hygiene can reduce the severity of OM, and evidence-based bundled care has shown to increase consistency of practice. Based on findings and recommendations from the literature, an oral care and hygiene bundle was developed. The oral care bundle included a soft bristled toothbrush, fluoride toothpaste, twice-daily brushing and sodium bicarbonate rinses, lip balm, and oral moisturizer. The hygiene component consisted of a daily bath or shower and daily linen changes. Education on the rationale and purpose for the use of an oral care and hygiene bundle was provided to the inpatient direct care staff prior to implementation on two inpatient oncology units. Audits were performed to measure the adherence of the oral care and hygiene bundle. Central line-associated bloodstream infections were measured in collaboration with the quality and infection prevention departments. Since the oral care and hygiene bundle was implemented, laboratory-confirmed bloodstream infection rates decreased from 1.05 to 0.54 per 1,000 catheter days, while mucosal barrier injury rates decreased from 2.98 to 1.27 per 1,000 catheter days.

Background: The nature of children's cancer comes with lots of ethical issues. Nurses are encouraged to adhere to ethical codes in their practice., Objectives: This study aimed to compare the perspectives of nurses and mothers of children with cancer regarding the adherence of nurses to ethical codes., Research Design: In this descriptive-comparative study, a researcher-made questionnaire was used to assess the amount of adherence to Iranian nurses' code of ethics in perspectives of pediatric oncology nurses and mothers. As a convention, the total scores were categorized as optimal, average, and low adherence., Participants and Context: A total of 200 mothers and 60 nurses in pediatric oncology wards of five major hospitals in Tehran, Iran, participated in 2016., Ethical Considerations: Organizational approval by the university and informed consent were ensured before conducting the research. The principles of voluntariness, confidentiality, and anonymity were respected during the research process., Findings: Results showed the mean score of the adherence to ethical codes by nurses, as per the nurses is 86.71 (12.57) and as per the mothers is 78.67 (16.09). The highest frequency for "Low adherence" and "Optimal adherence" to code of ethics by nurses were "Respect for individual autonomy and decision-making" (mothers, 72% and nurses, 70%) and "Commitment to confidentiality" (mothers, 64% and nurses, 74%), respectively. This revealed a significant difference between the responses of the nurses and the mothers (p = 0.001)., Discussion: The results support the other studies in Iran about the difference between the perspectives of patients and nurses about adherence of nurses to ethical codes., Conclusion: Integration of family-centered and conventional care in addition to more attention to the education of professional ethical principles could be helpful to improve the ethical performance of nurses in oncology pediatric wards.

Although father engagement in pediatric care is associated with positive child health outcomes, pediatric primary care providers (PCPs) often focus on the mother-child dyad. This study sought to characterize pediatric PCPs' engagement of fathers in care. Pediatric PCPs affiliated with an academic health system were invited to complete an online survey. The primary outcome was the proportion of providers who routinely implement American Academy of Pediatrics recommendations for father engagement. There were 100 respondents. Of the 23 recommended practices for engaging fathers, 18 were routinely implemented by <50% of respondents. The least routinely implemented practices were parenting skills support (4%) and perinatal depression screening (5%). The most commonly endorsed barriers included lack of father attendance at visits (91%) and time constraints (75%). Despite the American Academy of Pediatrics recommendations, pediatric PCPs do not routinely engage fathers in care. Effective strategies are needed to reduce barriers and improve father engagement among pediatric providers.

Pediatric oncology protocols frequently include multiple oral medications administered at varied dosing schedules, often for prolonged periods of time. Nonadherence to protocol-directed oral medications may place patients at increased risk for morbidity and mortality. The purpose of this systematic review was to evaluate the existing body of evidence to determine best-practice recommendations regarding interventions for oral medication adherence in children and adolescents with cancer. Twenty-four articles were systematically reviewed and evaluated according to the Grading of Recommendations, Assessment, Development, and Evaluation criteria; 2 studies focused on the pediatric oncology population, and the remaining 22 studies focused on other chronic illnesses of childhood. A variety of interventions to increase oral medication adherence in children were identified, including pill swallowing, technology, incentivization, education-based intervention, psychosocial support-based intervention, and combination intervention. Most interventions were shown to have some benefit in pediatrics, most in the non-oncology setting. The overall synthesis of the literature indicates that nonadherence to oral medications is a prevalent problem in pediatrics, and much work is needed to address this problem, particularly in pediatric oncology.

Pediatric stem cell transplant processes require information sharing among the patient, family, and clinicians regarding the child's condition, prognosis, and transplant procedures. To learn about perceived access to transplant information and involvement in decision making among child family members (9-22 years old), we completed a secondary analysis of 119 interviews conducted with pediatric patients, sibling donors, nondonor siblings/cousins, and guardians from 27 families prior to transplant. Perceptions of information access and involvement in transplant-related decisions were extracted and summarized. We compared child member perceptions to their guardians' and examined differences by child age and gender. Most child members perceived exclusion from transplant (79%) and donor (63%) information and decisions (63%) although this varied by child role. Gender was unrelated to involvement; older age was associated with less perceived exclusion. Congruence in perspectives across children and guardians was evident for eight (30%) families, most of whom ( n = 7) excluded the children.

Background: Diagnostic errors contribute to the large burden of healthcare-associated harm experienced by children. Primary care settings involve high diagnostic uncertainty and limited time and information, creating ideal conditions for diagnostic errors. We report on the design and conduct of Project RedDE, a stepped-wedge, cluster-randomized controlled trial of a virtual quality improvement collaborative aimed at reducing diagnostic errors in pediatric primary care., Methods: Project RedDE cluster-randomized pediatric primary care practices into one of three groups. Each group participated in a quality improvement collaborative targeting the same three diagnostic errors (missed diagnoses of elevated blood pressure and adolescent depression and delayed diagnoses of abnormal laboratory studies), but in a different sequence. During the quality improvement collaborative, practices worked both independently and collaboratively, leveraging general quality improvement strategies (e.g. process mapping) in addition to error-specific content (e.g. pocket guides for blood pressure norms) delivered during the intervention phase for each error. The quality improvement collaborative intervention included interactive learning sessions and webinars, quality improvement coaching at the team level, and repeated evaluation of failures via root cause analyses. Pragmatic data were collected monthly, submitted to a centralized data aggregator, and returned to the practices in the form of run charts comparing each practice's progress over time to that of the group. The primary analysis used patients as the unit of analysis and compared diagnostic error proportions between the intervention and baseline periods, while secondary analyses evaluated the sustainability of observed reductions in diagnostic errors after the intervention period ended., Results: A total of 43 practices were recruited and randomized into Project RedDE. Eleven practices withdrew before submitting any data, and one practice merged with another participating practice, leaving 31 practices that began work on Project RedDE. All but one of the diverse, national pediatric primary care practices that participated ultimately submitted complete data. Quality improvement collaborative participation was robust, with an average of 63% of practices present on quality improvement collaborative webinars and 85% of practices present for quality improvement collaborative learning sessions. Complete data included 30 months of outcome data for the first diagnostic error worked on, 24 months of outcome data for the second, and 16 months of data for the third., Lessons Learned and Limitations: Contamination across study groups was a recurring concern; concerted efforts were made to mitigate this risk. Electronic health records played a large role in teams' success., Conclusion: Project RedDE, a virtual quality improvement collaborative aimed at reducing diagnostic errors in pediatric primary care, successfully recruited and retained a diverse, national group of pediatric primary care practices. The stepped-wedge, cluster-randomized controlled trial design allowed for enhanced scientific efficiency.

Introduction: Chemotherapy-induced nausea can be distressing and difficult to manage in children with cancer. The purpose of this study was to investigate the utility of ginger aromatherapy in relieving chemotherapy-induced nausea in children with cancer., Method: This randomized, double-blind, placebo-controlled study of 49 children with cancer explored whether inhalation of the aroma of essential oil of ginger during chemotherapy decreased nausea compared with a placebo (water) or control (Johnson's baby shampoo) measured by prechemotherapy and postchemotherapy assessment with the Pediatric Nausea Assessment Tool (PeNAT)., Results: While well received, well tolerated, nontoxic, and noninvasive, ginger aromatherapy did not significantly decrease nausea in patients enrolled in this study. Among 21 patients who indicated feeling nausea prechemotherapy, 67% reported improvement, 5% worsening, and 28% no change in their postinfusion PeNAT score. We failed to detect a statistical significant difference in the change in PeNAT scores among the three groups.

Objective: To identify clinical and psychosocial factors associated with patient experience with care., Methods: We analyzed patient experience surveys, corresponding clinical and psychosocial the data of 1567 encounters using survey-weighted multivariate logistic regression analysis with willingness to recommend the facility as outcome variable., Results: Parents are less likely to recommend the facility if there were custody issues with the child during their stay, if the child has history of chronic medical condition, and if the child is male with odds ratio and corresponding 95% confidence interval of 0.38 [0.21, 0.69], 0.43 [0.24, 0.80], and 0.67 [0.45, 0.99] respectively. Parents of older patients (1-year difference) and parents of low socioeconomic status are more likely to recommend the facility (1.05 [1.01, 1.09] and 2.74 [1.72, 4.37] respectively)., Conclusions: Clinical and psychosocial factors significantly affect patient experience scores together with parent perception of provider-family communication and relationship, and hospital environment conducive for children.

Purpose: Children often experience the uncomfortable effects of invasive procedures as a part of primary care and during times of illness. Holistic comfort has been well documented in adult literature but little research exists on the understanding of holistic procedural comfort from the child's perspective. In this study, holistic comfort related to an invasive venipuncture procedure was explored in children age 5 to 7 years and their caregivers of all ages., Design: A qualitative descriptive design described by Sandelowski was used., Method: The philosophical underpinnings of naturalistic inquiry of Guba and Lincoln were used. Semistructured interviews were conducted with 13 child and 15 caregiver participants. Children also drew pictures to help describe their perceptions., Findings: Traditional thematic content analysis described by Hsieh and Shannon yielded four overarching themes of holistic comfort related to venipuncture procedures in children: Body Comfort, Cognitive and Emotional Comfort, Comfort in the Procedure Surroundings, and Comfort Play., Conclusions: Numerous recommendations for future research are included. Implications for nursing and related health sciences, organizational and administrative policy, invasive procedures, theory, and methods were found and are discussed. Findings from this study will assist nurses in providing procedure management for children from a holistic care perspective.

Introduction: The aim of this study was to evaluate the effectiveness and safety of a new three-component 'bundle' for insertion and management of centrally inserted central catheters (CICCs), designed to minimize catheter-related bloodstream infections (CRBSIs) in critically ill children., Methods: Our 'bundle' has three components: insertion, management, and education. Insertion and management recommendations include: skin antisepsis with 2% chlorhexidine; maximal barrier precautions; ultrasound-guided venipuncture; tunneling of the catheter when a long indwelling time is expected; glue on the exit site; sutureless securement; use of transparent dressing; chlorhexidine sponge dressing on the 7 th day; neutral displacement needle-free connectors. All CICCs were inserted by appropriately trained physicians proficient in a standardized simulation training program., Results: We compared CRBSI rate per 1000 catheters-days of CICCs inserted before adoption of our new bundle with that of CICCs inserted after implementation of the bundle. CICCs inserted after adoption of the bundle remained in place for a mean of 2.2 days longer than those inserted before. We found a drop in CRBSI rate to 10%, from 15 per 1000 catheters-days to 1.5., Conclusions: Our data suggest that a bundle aimed at minimizing CR-BSI in critically ill children should incorporate four practices: (1) ultrasound guidance, which minimizes contamination by reducing the number of attempts and possible break-down of aseptic technique; (2) tunneling the catheter to obtain exit site in the infra-clavicular area with reduced bacterial colonization; (3) glue, which seals and protects the exit site; (4) simulation-based education of the staff.

The administration of chemotherapy to children with cancer is a high-risk process that must be performed in a safe and consistent manner with high reliability. Clinical trials play a major role in the treatment of children with cancer; conformance to chemotherapy protocol requirements and accurate documentation in the medical record are critical. Inconsistencies in the administration and documentation of chemotherapy were identified as opportunities for errors to occur. A major process improvement was initiated to establish best practices for nurses who administer chemotherapy to children. An interdisciplinary team was formed to evaluate the current process and to develop best practices based on current evidence, protocol requirements, available resources, and safety requirements. The process improvement focused on the establishment of standardized and safe administration techniques, exact administration times, and consistent electronic documentation that could easily be retrieved in medical record audits. Quality improvement tools including SBAR (Situation, Background, Assessment, Recommendation), process mapping, PDSA (Plan, Do. Study, Act) cycles, and quality metrics were used with this process improvement. The team established best practices in chemotherapy administration to children that have proven to be safe and reliable. Follow-up data have demonstrated that the project was highly successful and improved accuracy, patient and nurse safety, and effectiveness of chemotherapy administration., (© 2015 by Association of Pediatric Hematology/Oncology Nurses.)

A reporting and learning system is a method of monitoring the occurrence of incidents that affect patient safety. This cross-sectional survey asked pediatric chiropractors about factors that may limit their participation in such a system. The list of potential barriers for participation was developed using a systematic approach. All members of the 2 pediatric councils associated with US national chiropractic organizations were invited to complete the survey (N = 400). The cross-sectional survey was created using an online survey tool (REDCap) and sent directly to member emails addressed by the respective executive committees. Of the 400 potential respondents, 81 responded (20.3%). The most common limitations to participating were identified as time pressure (96%) and patient concerns (81%). Reporting and learning systems have been utilized to increase safety awareness in many high-risk industries. To be successful, future patient safety studies with pediatric chiropractors need to ensure these barriers are understood and addressed., (© The Author(s) 2015.)

Background: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate., Aim: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors., Design: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology., Data Sources: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report., Results: Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality., Conclusion: The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings., (© The Author(s) 2015.)

Information is an important need in order for parents to be empowered to face their child's cancer condition. To explore the information needs of parents of children with cancer treated at an academic hospital in the Gauteng Province of South Africa, a descriptive phenomenological design was selected. The study setting was an academic hospital in Johannesburg and purposive sampling included 13 parents who spoke English and were willing to participate in the study. Qualitative interviews were conducted and thematic analyses were used to analyze the data. Four themes emerged from the data: the shock of the diagnosis, information needs about the disease and investigations, living with the treatment, and communication of the information. There was no consensus on which information was needed at specific points in time and parents had different opinions on how information should be made available to them. Continuous assessment allowing individualized information, according to the preference of the parents in the language of choice, could possibly meet their information needs., (© 2015 by Association of Pediatric Hematology/Oncology Nurses.)

Objective: The purpose of our study was to compare the clinical utility of administering 2 recommended developmental screening instruments, the Infant Developmental Inventory (IDI) and the Ages and Stages Questionnaire (ASQ), at 9-month well-child visits in paper format., Methods: Outcomes of the 2 screens, including correct completion and interpretation by clinician, time of visit, and screen outcome were compared., Results: Out of 33 children administered the ASQ and with documented scores, 12 (36.4%) did not receive passing scores, while 5 (12.2%) of the 41 children administered the IDI did not receive passing scores (P = .014). Out of 41 IDI screens, 12 (29.3%) were completed incorrectly, while there were no ASQ screens completed incorrectly (P < .001) by caregivers., Conclusion: In our pilot study, the ASQ is more often completed correctly by caregivers and identifies more children at risk for delay as compared with the IDI. Additional larger scale studies are needed to evaluate the usefulness of developmental screening tools when used within primary care practice., (© The Author(s) 2014.)

This pilot study investigated the effect of the Pediatric Symptom Checklist (PSC) on identification of and physician response to behavioral health (BH) concerns. Researchers reviewed 1211 charts of youth aged 4 to 16 years. Records were compared during baseline and an intervention consisting of implementation of the PSC to determine the rate of BH identification and pediatrician response. Access to PSC data resulted in a trivial difference in BH concerns identified by physicians and did not affect physician responses. This case study demonstrates that simply implementing BH screening in primary care may not result in improved outcomes for these children., (© The Author(s) 2014.)

Conferences are novel sites for understanding medical work. Through describing styles of presentation that take place at conferences attended by patients and parents, this article highlights how clinicians on stage present ordinary and extraordinary aspects of medicine. Attention is drawn to the reaction of the parents in the audience. The power of the presenter to direct proceedings highlights the potential vulnerability of the audience. The relationship between clinician on stage and parents in the audience reflects the clinical relationship between doctor and patient. But through identifying insiders and outsiders, the conference setting also enables new relationships and collective identities to be formed. Drawing on an ethnographic study of rare disease conferences, this article extends understanding of medical work by identifying how conferences offer new ways of witnessing the clinical gaze, the doctor-patient relationship and the formation and enactment of a conference community., (© The Author(s) 2014.)

Introduction: This quality improvement (QI) project addresses a method for experienced health care providers to maintain skill-based competence for intrathecal access procedures., Methods: A prospective QI design using intrathecal access simulation to assess, educate, and evaluate skill competency. Simulation was used as a strategy to promote patient safety and standardize practice patterns. Pretest and posttest methodology using paired t tests were performed to assess anxiety, confidence, and knowledge., Results: Fourteen pediatric providers participated in this QI project. There was a statistically significant improvement in confidence measuring intracranial pressure (ICP; t = -2.92, P = .013), performance-related overall anxiety (t = -2.132, P = .05) and administering intrathecal chemotherapy (t = -2.144, P = .053). Fifty percent of participants missed a medication error demonstrating confirmation bias., Conclusion: This simulation strategy resulted in improved confidence in measuring ICP, performance-related overall anxiety, and confidence in administering chemotherapy. Confirmation bias occurred during simulation testing for a medication error. We propose this method for maintaining clinical competencies in health care providers and introducing new skills to existing practices., (© 2014 by Association of Pediatric Hematology/Oncology Nurses.)

Our goals were to (1) estimate the rates of parent-reported versus physician-diagnosed food allergy, (2) determine pediatrician adherence to national guidelines, and (3) obtain pediatricians' perspectives on guideline nonadherence. A mixed method approach was used, including survey, chart review, and qualitative methods. Overall, 10.9% of parents reported having a child with food allergy and two thirds of these cases were detected by the pediatrician. Chart reviews revealed high rates of guideline adherence with respect to allergist referral (67.3%), but less consistent adherence regarding documentation of reaction history (38.8%), appropriate use of diagnostic tests (34.7%), prescription of epinephrine autoinjectors (44.9%), and counseling families in food allergy management (24.5%). Pediatricians suggested that poor adherence was due to lack of documentation, familiarity with guidelines, and clarity regarding the pediatrician's role in managing food allergy. Findings emphasize the need to better establish the role of the pediatrician and to improve awareness and adherence to guidelines.

Purpose: Safe ambulance transport of children presents unique challenges. Our study describes child passenger restraint practices during ambulance transport, Emergency Medical Service (EMS) providers' knowledge, training, and use of child passenger restraint devices (CRD)., Methods: A child passenger safety technician (CPST) recorded restraint used for pediatric ambulance transport. The CPST assessed and documented type of CRD used, securement, and whether the child was properly restrained. EMS providers' knowledge, training, and CRD use for ambulance transport were assessed., Results: The study period spanned July 2009 to July 2010; 63 EMS personnel were interviewed and 40 children were observed. Approximately 75% of emergency medical technicians surveyed felt their knowledge of pediatric transport was adequate. Fourteen percent allowed a stable patient to be transported via parent's lap. Twelve percent were transported unrestrained. None of the 11 patients, birth to 3 years, were found to be transported correctly., Conclusion: Study findings supports education and training of EMS personnel to improve the safe ambulance transport of children.

Background: Children 3 to 5 years old with developmental delays are eligible for special education services., Objective: To assess primary care physicians' (PCPs) knowledge, attitudes, and practices regarding their referrals to the special education system on behalf of children 3 to 5 years old., Design/methods: Mail survey of 400 office-based general pediatricians and 414 family physicians in Michigan, fielded in fall 2012 and winter 2013, with a response rate of 44%. The 4-page survey included knowledge questions about special education eligibility, PCPs' role in accessing school-based services, and self-confidence in ability to help patients access these services., Results: PCPs neither fully understood requirements for special education services nor were they very confident in identifying 3- to 5-year-old children eligible for special education services., Conclusions: PCPs recognize interacting with special education as a relative weakness, and they may be accepting of interventions to improve their knowledge and skills.

Objective: We examined the sensitivity and specificity of an obesity diagnosis in a nationally representative sample of pediatric outpatient visits., Methods: We used the 2005 to 2009 National Ambulatory Medical Care and National Hospital Ambulatory Medical Care surveys. We included visits with children 2 to 18 years, yielding a sample of 48 145 database visits. We determined 3 methods of identifying obesity: documented body mass index (BMI) ≥95th percentile; International Classification of Diseases, Ninth Revision (ICD-9) code; and positive answer to the question, "Does the patient now have obesity?" Using BMI as the gold standard, we calculated the sensitivity and specificity of a clinical obesity diagnosis., Results: Among the 19.5% of children who were obese by BMI, 7.0% had an ICD-9 code and 15.2% had a positive response to questioning. The sensitivity of an obesity diagnosis was 15.4%, and the specificity was 99.2%., Conclusions: The sensitivity of the obesity diagnosis in pediatric ambulatory visits is low. Efforts are needed to increase identification of obese children.

Background: There has been tremendous growth in research in pediatric multiple sclerosis (MS) and immune mediated central nervous system demyelinating disorders since operational definitions for these conditions were first proposed in 2007. Further, the International Pediatric Multiple Sclerosis Study Group (IPMSSG), which proposed the criteria, has expanded substantially in membership and in its international scope., Objective: The purpose of this review is to revise the 2007 definitions in order to incorporate advances in delineating the clinical and neuroradiologic features of these disorders., Methods: Through a consensus process, in which input was sought from the 150 members of the Study Group, criteria were drafted, revised and finalized. Final approval was sought through a web survey., Results: Revised criteria are proposed for pediatric acute disseminated encephalomyelitis, pediatric clinically isolated syndrome, pediatric neuromyelitis optica and pediatric MS. These criteria were approved by 93% or more of the 56 Study Group members who responded to the final survey., Conclusions: These definitions are proposed for clinical and research purposes. Their utility will depend on the outcomes of their application in prospective research.

The purpose of the Pediatric Overweight Quality Improvement Initiative (POWQII) was to demonstrate the feasibility and value of simple interventions for improving pediatric care and to address the additional needs of overweight and obese children. Practices were recruited from around New Mexico, with 16 pediatricians completing the POWQII within 9 to 12 months. Initially, documentation of BMI percentile across all practices was only 49%, increasing to more than 90% on average following the first intervention and eventually reaching an average of 99%. Nutrition and physical activity counseling started at 52% and 39%, respectively, increasing to 87% for nutrition and 77% for physical activity. Diagnosis of POW patients improved over the course of the POWQII (67% to 94%). This intervention's potential impact can extend to a larger population of patients, resulting in twice as many receiving screening for POW and increasing best practices known to improve ongoing care and patient outcomes.