Perceptions of chemotherapy calendar creation among US pediatric oncologists.

BACKGROUND: An effective chemotherapy calendar system between the clinician and the patient/caregiver can improve patient-centered outcomes. There is lack of research on how chemotherapy calendars are created and what aspects are important to pediatric oncology physicians. PROCEDURE: In an online survey of pediatric oncology physicians, we evaluated institutional practices, perceptions of chemotherapy calendar creation, and desires for future tools. A total of 220 survey participants provided data (10.4% participant response rate) from 123 institutions (53.5% represented institutions). RESULTS: Participants indicated that 72% always or most of the time their institution provides a chemotherapy calendar, most commonly at the start of a new cycle (90%) or with a dosing change (68%). Factors such as the health literacy of the family, prior nonadherence, type of cancer, and desire of the family affected the creation decision. Advanced practice providers (45%) or nurse coordinator/navigators (43%) were most likely to create the chemotherapy calendar. No significant difference was found between the likelihood of creating a chemotherapy calendar and institutional size (p = .09) or physician years in practice (p = .26). Approximately 95% of participants indicated chemotherapy calendar creation software that improved ease and efficiency would be moderately to extremely useful. CONCLUSION: Future efforts should focus on co-design of an efficient and effective chemotherapy calendar by engaging with nursing and advanced practice providers along with caregivers of children with cancer.

Understanding caregiver burden with accessing sickle cell care in the Midwest and their perspective on telemedicine.

BACKGROUND: Survival for children with sickle cell disease (SCD) has improved significantly. However, patients with SCD still encounter several impediments to accessing adequate healthcare. Rural and medically underserved areas, such as parts of the Midwest, can exacerbate these barriers, separating children with SCD from subspecialists even further. Telemedicine has been a means to close these gaps in care for children with other special healthcare needs, but few studies have discussed how caregivers of children with SCD perceive its use. METHODS: The objective of this study is to understand the experiences of caregivers of pediatric SCD patients in a geographically diverse area in the Midwest in accessing care, and their perspectives of telemedicine. Caregivers of children with SCD completed an 88-item survey via a secured REDCap link either in-person or via secure text. Descriptive statistics (means, medians, ranges, frequencies) were performed for all responses. Univariate chi square tests were performed to analyze associations, particularly with telemedicine responses. RESULTS: The survey was completed by 101 caregivers. Nearly 20% of families traveled more than 1 hour to reach the comprehensive SCD center. Other than their SCD provider, caregivers reported their child having at least 2 other healthcare providers. Most barriers caregivers identified were financial or resource based. Almost a quarter of caregivers expressed feeling as though these barriers impacted their and/or their child's mental health. Ease of access to team members, as well as scheduling, were common facilitators of care cited by caregivers. The majority were willing to participate in telemedicine visits, regardless of how far they lived from the SCD center, though many noted aspects requiring adaptation. CONCLUSION: This cross-sectional study describes barriers to care experienced by caregivers of children with SCD, regardless of proximity to an SCD center, as well as caregiver perceptions of the usefulness and acceptability of telemedicine for SCD care.

Outpatient Opioid Prescriptions are Associated With Future Substance Use Disorders and Overdose Following Adolescent Trauma.

OBJECTIVE: This study aims to determine if outpatient opioid prescriptions are associated with future SUD diagnoses and overdose in injured adolescents 5 years following hospital discharge. SUMMARY OF BACKGROUND DATA: Approximately, 1 in 8 adolescents are diagnosed with an SUD and 1 in 10 experience an overdose in the 5 years following injury. State laws have become more restrictive on opioid prescribing by acute care providers for treating pain, however, prescriptions from other outpatient providers are still often obtained. METHODS: This was a retrospective cohort study of patients ages 12-18 admitted to 2 level I trauma centers. Demographic and clinical data contained in trauma registries were linked to a regional database containing 5 years of electronic health records and prescription data. Regression models assessed whether number of outpatient opioid prescription fills after discharge at different time points in recovery were associated with a new SUD diagnosis or overdose, while controlling for demographic and injury characteristics, and depression and posttraumatic stress disorder diagnoses. RESULTS: We linked 669 patients (90.9%) from trauma registries to a regional health information exchange database. Each prescription opioid refill in the first 3 months after discharge increased the likelihood of new SUD diagnoses by 55% (odds ratio: 1.55, confidence interval: 1.04-2.32). Odds of overdose increased with ongoing opioid use over 2-4 years post-discharge ( P = 0.016-0.025). CONCLUSIONS: Short-term outpatient opioid prescribing over the first few months of recovery had the largest effect on developing an SUD, while long-term prescription use over multiple years was associated with a future overdose.

Caregiver experiences with accessing sickle cell care and the use of telemedicine.

BACKGROUND: Sickle cell disease (SCD) is associated with a wide range of complications. However, a multitude of barriers prevent SCD patients from receiving adequate healthcare, including difficulties with transportation and lack of provider knowledge about disease sequelae. Importantly, studies have demonstrated the benefits of telemedicine in addressing barriers to healthcare. While previous studies have identified barriers to care through quantitative methods, few studies have explored barriers which affect the pediatric SCD patient population in the Midwest, wherein the geographical landscape can prohibit healthcare access. Furthermore, few studies have established acceptability of telemedicine among caregivers and patients with SCD. METHODS: This study aims to increase understanding of barriers to care and perceptions of telemedicine by caregivers of pediatric SCD patients in a medically under-resourced area in the Midwest. Researchers conducted semi-structured interviews with caregivers of children with SCD. The interviews were audio-recorded and transcribed. Thematic analyses were performed. RESULTS: Researchers interviewed 16 caregivers of 15 children with SCD. Thematic analyses of the interview transcripts revealed four broad themes regarding caregiver burden/stress, both facilitators and barriers to SCD healthcare, and general thoughts on the acceptability/usefulness of telemedicine. CONCLUSION: This qualitative study describes common burdens faced by caregivers of SCD, barriers to and facilitators of SCD care in the Midwest, and caregiver perceptions of the usefulness and efficacy of telemedicine for SCD care.

Variation in hospital admission from the emergency department for children with cancer: A Pediatric Health Information System study.

BACKGROUND: Children with cancer experience a wide range of conditions that require urgent evaluation in the emergency department (ED), yet variation in admission rates is poorly documented. PROCEDURE: We performed a retrospective cohort study using the Pediatric Health Information System of ED encounters by children with cancer between July 2012 and June 2015. We compared demographics for admitted versus discharged using univariate statistics, and calculated admission rates by hospital, diagnosis, day of the week, and weekend versus weekday. We assessed the degree of interhospital admission rates using the index of dispersion (ID). RESULTS: Children with cancer had 60 054 ED encounters at 37 hospitals. Overall, 62.5% were admitted (range 43.2%-92.1%, ID 2.6) indicating overdispersed admission rates with high variability. Children with cancer that visited the ED for a primary diagnosis of fever experienced the largest amount of variability in admission with rates ranging from 10.4% to 74.1% (ID 8.1). Less variability existed among hospital admission rates for both neutropenia (range 60%-100%, ID 1.0) and febrile neutropenia (FN) (range 66.7%-100%, ID 0.83). Admission rates by day of the week did not demonstrate significant variability for any of the scenarios examined (overall P = 0.91). There were no differences by weekend versus weekday either (overall P = 0.52). CONCLUSION: The percentage of children with cancer admitted through the ED varies widely by institution and diagnosis. Standardization of best practices for children with cancer admitted through the ED should be an area of continued improvement.

Variation in hospital admission of sickle cell patients from the emergency department using the Pediatric Health Information System.

BACKGROUND: Universal newborn screening and improved treatment options have led to increased survival in sickle cell disease (SCD). However, patients with SCD still rely heavily on acute care services. OBJECTIVE: To determine the variation seen in hospitalizations for the top complaints for ED visits for children with SCD nationally. METHODS: We performed a retrospective review of the Pediatric Health Information Systems (PHIS) Database between October 2011 and September 2015. Emergency department (ED) encounters were selected by using International Classification of Diseases, Ninth Edition, Clinical Modification (ICD-9-CM) codes for SCD with and without crisis, fever, and pain. Univariate analyses were performed, as well as index of dispersion (ID) to assess variation by day of the week and region. ANOVA and t-test were used to determine statistical significance. RESULTS: A total of 68 661 ED encounters at 36 hospitals met the criteria for inclusion. Of those encounters, 50.1% were admitted to the hospital. Pain and fever were the most common primary diagnoses among this population. Although variation in hospitalization was seen overall, as well as for a primary diagnosis of pain or fever, this variation was not explained by weekday/weekend designation. CONCLUSION: The results of our study confirm pain and fever as the most common primary diagnoses for children with SCD who seek acute care, as well as demonstrate that while significant variation in hospitalization exists, it is not associated with day of the week. Further studies to elucidate patient- and hospital-level factors that influence admission variation are necessary.

Emergency Department Provider Survey Regarding Acute Sickle Cell Pain Management.

Sickle cell disease (SCD) can lead to potentially devastating complications that occur secondary to vaso-occlusion. Current national clinical guidelines are largely based on expert opinion, resulting in significant variation of management. Provider awareness regarding emergency department (ED) management of vaso-occlusive crises (VOC) remains unknown. A 23-question assessment of VOC management was administered to all eligible ED providers at Riley Hospital for Children between September and November 2018. Univariate analyses were performed to evaluate responses between groups. Of 52 respondents comprised of ED staff attendings (27%), resident trainees (58%), and ED nurses (15%), the majority were not aware of SCD management guidelines being available. Approximately 54% of providers endorsed a high comfort level in managing VOC, with staff and nurses more likely to report this than trainees (P=0.02). Less than 10% of all providers knew the recommended timeframe from triage to initial medication administration. Prolonged time between pain assessments was reported by 25% of providers with a high comfort level in managing VOC, which was similar to providers with a lower comfort level (13%, P=0.217). Only one fourth of all respondents appropriately did not use vital signs as an indication of a patient's pain level, and >10% reported not utilizing patient-reported pain scores. This was not significantly different between provider comfort levels (P=0.285 and 0.412, relatively). Our results suggest education regarding recommended practices was inadequate regardless of reported provider comfort. Further provider education and/or standardized ED VOC management guidelines may serve as areas for improvement in SCD care.

The ENCOURAGE healthy families study: A comparative effectiveness trial to reduce risk for type 2 diabetes in mothers and children.

INTRODUCTION: Trials in adults have demonstrated that interventions targeting lifestyle are effective in preventing or delaying type 2 diabetes (T2D). To address this need in youth, we developed ENCOURAGE Healthy Families (ENCOURAGE), based on the US Diabetes Prevention Program (DPP). STUDY DESIGN: Here, we present results of the ENCOURAGE randomized, comparative effectiveness trial in which we evaluated ENCOURAGE delivered to (1) mothers only, and (2) mothers with added content delivered to their children. PARTICIPANTS: The study was performed in Indianapolis, IN, at an academic medical center and the YMCA; December 2012 to April 2016. Women with a history of gestational diabetes mellitus (GDM) or prediabetes with children aged 8 to 15 years enrolled (n = 128). OUTCOME MEASURES: Outcomes were collected at baseline, postintervention (3 months), 6 and 12 months. The primary outcome was weight change at 3 months in adults; secondary outcomes included glycosylated hemoglobin (HbA1c), lipids, and blood pressure. RESULTS: In neither program did mothers' weight change. HbA1c decreased at 3 months in both groups (mothers only=-0.09%, P = .019; mothers and children=-0.11%, P = .003). Participating children had a reduction in body mass index (BMI) percentile at 3 (-1.77, P = .014), 6 (-3.0, P = .002), and 12 months (-2.91, P = .004). HbA1c decreased in children in both groups (mothers only = -0.12% at 3 months [P < .0001], -0.13% at 6 months [P < .001], and -0.07% at 12 months [P = .001]; mothers and children = -0.08% at 3 months (P < .0001), -0.07% at 6 months (P = .0004), and -0.04% at 12 months (P = .03). CONCLUSION: ENCOURAGE was beneficial for reducing BMI percentile in participating children.

Advancing diabetes management in adolescents: Comparative effectiveness of mobile self-monitoring blood glucose technology and family-centered goal setting.

BACKGROUND: As adolescents gain autonomy, it remains important for parents to be involved with diabetes management to avoid deterioration in glycemic control. Technologies for self-monitoring of blood glucose (SMBG) allow for remote monitoring in real-time by parents. This research compared 3 strategies for improving SMBG and diabetes self-care in the short-term. These strategies were: (1) health information technology (HIT)-enhanced blood glucose meter that shared blood glucose data among patients, their parent, and care providers, and allowed for text messaging; (2) family-centered goal setting; and (3) a combination of (1) and (2). METHODS: One hundred twenty-eight participants enrolled; 97 adolescent-parent pairs attended clinic at 3-month intervals during the 6-month intervention. Differences between treatment groups were evaluated using analysis of variance (ANOVAs) for continuous variables and χ2 tests for frequencies. Within patient changes were evaluated using paired t tests. RESULTS: Participants in the HIT-enhanced SMBG group had no change in mean glycosylated hemoglobin (HbA1c). Participants assigned to family-centered goal setting had a non-significant decrease in HbA1c of -0.3% (P = .26) from baseline to 6 months. Participants in the combined approach had a significant decrease in HbA1c of -0.6% (P = .02) from baseline to 3 months, but the decrease of -0.4% at 6 months was non-significant (P = .51). The change in HbA1c from baseline to 3 months was greater for the combined approach than for the HIT-enhanced SMBG (P = .05) or family-centered goal setting (P = .01). CONCLUSIONS: Our data suggest that utilizing the family-centered goal setting strategy when implementing HIT-enhanced diabetes technology deserves further study.

A survey of mobile technology usage and desires by caregivers of children with cancer.

BACKGROUND: The use of mobile health (mHealth) has grown exponentially, even by caregivers of vulnerable populations. The study objective was to understand mobile technology usage, barriers, and desires by caregivers of children with cancer. PROCEDURE: Paper surveys were mailed to caregivers of children diagnosed with cancer at Riley Hospital for Children between June 2015 and June 2017. The survey contained 13 questions, both fixed and open-ended, and was sent in both English and Spanish up to three times. RESULTS: Respondents (n = 121) were primarily parents (93.2%), median age was 40.7 years (range 23-63), and most were white, non-Hispanic (74.4%). The majority made under $100,000 annual household income (72.9%) and had an education of at least some college or greater (74.5%). Nearly all owned a smart phone (99.2%) and most (61.2%) owned a tablet. Among operating systems, the majority used iOS (62.8%), while 49.6% used Android. About a third (37.1%) reported no barriers to mobile technology use, but 22.4% experienced "data limitations." Overall, 86.2% wanted at least one medical management website/app: medical knowledge (61.2%), symptom tracking/management (49.1%), and medication reminders (44.8%). Further, 62.1% wanted access to child's medical record and 58.6% wanted communication with medical providers. Lower education was significantly associated with experiencing phone/plan barriers (P = 0.008). CONCLUSION: The majority of caregivers of children with cancer use mobile technology with minimal barriers; future research should focus on designing an mHealth tool to address the medical management needs by caregivers of children with cancer.

A randomized trial of the effectiveness of the neutropenic diet versus food safety guidelines on infection rate in pediatric oncology patients.

BACKGROUND: The neutropenic diet (ND) is prescribed to avoid introduction of bacteria into a host's gastrointestinal tract and reduce infection. Due to a lack of evidence to support the ND, there continues to be debate among pediatric oncologists regarding its usefulness. This prospective randomized controlled trial evaluated the difference in neutropenic infection rates in pediatric oncology patients randomized to Food and Drug Administration approved food safety guidelines (FSGs) versus the ND plus FSGs during one cycle of chemotherapy. PROCEDURE: Pediatric patients receiving cancer treatment with myelosuppressive chemotherapy were eligible. Neutropenic infection was the primary outcome and defined as (i) fever with neutropenia or (ii) hospital admission and treatment for clinical infection and neutropenia. The rate of neutropenic infection was compared with Student's t-test for independent samples. Documented infections were identified by comprehensive chart review and compared between groups using a χ2 test. RESULTS: One hundred fifty patients were randomly assigned to FSGs (n = 73) or ND + FSGs (n = 77). The most common diagnoses were acute lymphoblastic leukemia (32%) and sarcoma (32%). There was no significant difference between the groups in the percentage of patients who developed neutropenic infection: FSGs 33% versus ND + FSGs 35% (P = 0.78). Patients randomized to ND + FSGs reported that following the diet required more effort than those on FSGs alone. CONCLUSION: The ND offers no benefit over FSGs in the prevention of infection in pediatric oncology patients undergoing myelosuppressive chemotherapy and adherence requires more effort for patients and families. Institutions caring for children with cancer should consider replacing ND guidelines with FSGs.

Emergency Department Chief Complaints Among Children With Cancer.

Children with cancer have high emergency department (ED) utilization, but little is known about their chief complaints. A retrospective chart review of ED chief complaints for children with cancer (actively receiving therapy) at Riley Hospital for Children from January 2014 to December 2015 was performed. Proportions of visits and disposition for top 5 chief complaints were determined. Multivariate logistic regression analyzed factors associated with admission. There were 598 encounters by 231 children with cancer. About half (49%) had >1 complaint. The 5 most common primary chief complaints were: fever (60.2%), pain (6.5%), nausea/vomiting (5.0%), bleeding (3.9%), and abnormal laboratory values (3.3%). Admission rates varied, with the highest rates being for nausea/vomiting (66.7%). Risk factors for admission were: hospitalization in prior 4 weeks (odds ratio [OR], 2.67; confidence interval [CI], 1.77-4.02), chief complaint of fever (OR, 1.90; CI, 1.16-3.09). For each increase in number of chief complaints, odds increased by 1.45 (CI, 1.14-1.83). Black, non-Hispanic (OR, 0.44; CI, 0.22-0.88) as compared with white, non-Hispanic, younger age (OR, 0.53; CI, 0.29-0.99) or complaint of abnormal laboratory values (OR, 0.20; CI, 0.06-0.68) had lower odds of admission. Children with cancer present to the ED with multiple and varied complaints. Future interventions could aim to improve caregiver anticipatory guidance and ED visit preparedness.

Prevalence of pain reports in pediatric primary care and association with demographics, body mass index, and exam findings: a cross-sectional study.

BACKGROUND: Pediatric pain is associated to patient weight and demographics in specialized settings, but pain prevalence and its associated patient attributes in general pediatric outpatient care are unknown. Our objective was to determine the rate of positive pain screenings in pediatric primary care and evaluate the relationship between reported pain and obesity, demographics, and exam findings during routine pediatric encounters. METHODS: Cross-sectional observational study of 26,180 patients ages 2 to 19 seen in five urban pediatric primary care clinics between 2009 and 2016. Data were collected from systematic screening using a computerized clinical decision support system. Multivariable logistic regressions were used to analyze the association between pain reporting and obesity (body mass index), age, sex, race, season, insurance status, clinic site, prior pain reporting, pain reporting method, and exam findings. RESULTS: Pain was reported by the patient or caregiver in 14.9% of visits. In adjusted models, pain reporting was associated with obesity (Odds Ratio (OR) 1.23, 95% Confidence Intervals (CI) 1.11-1.35) and severe obesity (OR 1.32, CI 1.17-1.49); adolescents (OR 1.47, CI 1.33-1.61); and females (OR 1.21, CI 1.12-1.29). Pain reported at the preceding visit increased odds of pain reporting 2.67 times (CI 2.42-2.95). Abnormal abdominal, extremity, ear, nose, throat, and lymph node exams were associated with pain reporting. Pain reporting increased in minority races within clinics that predominantly saw a concordant race. CONCLUSIONS: Pain is common in general pediatric encounters, and occurs more frequently in obese children and those who previously reported pain. Pain reporting may be influenced by seasonal variation and clinic factors. Future pediatric pain screening may be guided by associated risk factors to improve identification and targeted healthcare interventions.

Independent investigator incubator (I3): a comprehensive mentorship program to jumpstart productive research careers for junior faculty.

BACKGROUND: In the highly competitive environment of academic medicine, junior faculty investigators face high attrition rates due to challenges in finding effective mentorship, securing grant funding, and obtaining resources to support their career development and research productivity. The purpose of this study was to describe the centralized, cost-sharing design of the Independent Investigator Incubator (I3) program as a novel approach to junior faculty mentoring and to evaluate quantitative outcomes for program improvement. METHODS: In September 2014, the I3 pilot program, a comprehensive mentorship program targeting junior faculty pursuing research careers, was launched. Participants included junior faculty during the crucial first three years of their research careers or during their transition from career development awards to more independent research. Following initial screening, the I3 mentees were paired with a senior faculty "super-mentor" with expertise in either basic science or clinical research. Mentees were provided with robust traditional one-on-one mentoring, targeted feedback from a super-mentor review committee, as well as biostatistician and grant writing support. To assess the effectiveness of the I3 program, we tracked outcome measures via baseline and 12-month mentee surveys. Data collected assessed program diversity, mentee self-assessments, evaluation of the mentoring relationship, scholarship and productivity metrics. Raw data were analyzed using a paired t-test in Excel (P < 0.05). RESULTS: Results of the baseline mentee self-assessment survey found that the I3 mentees indicated common "perceive deficits" including navigating the organizational and institutional culture, clear direction in achieving promotion and tenure, among others. When baseline mentee survey responses were compared to 12-month responses, we identified strong "perceived growth" in categories, such as Research and Interpersonal Skills and Career Development Skills. Further, productivity metrics at 12-months revealed that roughly 80% of I3 mentees successfully published a manuscript(s). The I3 program has helped generate roughly $12.1 million dollars in investigator-initiated funding after two years in the program. CONCLUSION: The I3 program allows for shared costs between institutions and increased availability of successful subject matter experts. Study results imply that the I3 mentoring program provides transformative mentorship for junior faculty. Using our findings, we developed courses and an annual "snapshot" of mentee performance for mentors.

Healthcare utilization and spending by children with cancer on Medicaid.

BACKGROUND: Children with cancer are a unique patient population with high resource, complex healthcare needs. Understanding their healthcare utilization could highlight areas for care optimization. PROCEDURE: We performed a retrospective, cross-sectional analysis of the 2014 Truven Marketscan Medicaid Database to explore clinical attributes, utilization, and spending among children with cancer who were Medicaid enrollees. Eligible patients included children (ages 0-18 years) with cancer (Clinical Risk Group 8). Healthcare utilization and spending (per member per month, PMPM) were assessed overall and across specific healthcare services. RESULTS: Children with cancer (n = 5,405) represent less than 1% of the 1,516,457 children with medical complexity in the dataset. Children with cancer had high services use: laboratory/radiographic testing (93.0%), outpatient specialty care (83.4%), outpatient therapy/treatment (53.4%), emergency department (43.7%), hospitalization (31.5%), home healthcare (9.5%). PMPM spending for children with cancer was $3,706 overall and $2,323 for hospital care. CONCLUSION: Children with cancer have high healthcare resource use and spending. Differences in geographic distribution of services for children with cancer and the trajectory of spending over the course of therapy are areas for future investigation aimed at lowering costs of care without compromising on health outcomes.

Frequent Emergency Department Utilizers Among Children with Cancer.

BACKGROUND: Pediatric frequent emergency department (ED) utilizers contribute a significant proportion of ED visits, but no studies specifically address children with cancer. METHODS: A retrospective study of Pediatric Health Information System analyzing ED visits for children with cancer, including ED visits within 365 days from the first inpatient encounter with a discharge diagnosis code for malignancy. We defined frequent ED utilizers as those with four or more visits in the year (top 10th percentile). Patient characteristics and ED services (medications, laboratory, or imaging) for discharged children were assessed. Factors associated with being a frequent ED utilizer were examined with multivariable regression. RESULTS: Frequent utilizers accounted for 58% of ED visits. Frequent utilizers differed from infrequent utilizers in terms of type of cancer; 39.3% of frequent utilizers had acute lymphoblastic leukemia (ALL) and 16.0% had central nervous system (CNS) tumors compared with infrequent utilizers (21.9% had ALL and 24.8% CNS tumors, P-value < 0.001). Frequent utilization was associated with age 5-9 years (odds ratio [OR] = 1.4, 95% confidence interval [CI] 1.2-1.6) or 1-4 years (OR = 2.1, 95% CI 1.8-2.4) or <1 year (OR = 2.2, 95% CI 1.9-2.6) compared to 15-19 years and Hispanic ethnicity (OR 1.3, 95% CI 1.1-1.5) compared to white, non-Hispanics, and urban residence (OR = 1.5, 95% CI 1.3-1.7). Few children with cancer received no medication, laboratory, or imaging during their ED visit (frequent 11.0% vs. infrequent 12.5%, P = 0.01). CONCLUSIONS: The ED is integral to the care provided to children with cancer. The subset of frequent utilizers should be the focus of future research and quality improvement efforts.

Fever and neutropenia hospital discharges in children with cancer: A 2012 update.

Fever and neutropenia (FN) is a common precipitant for hospitalization among children with cancer, but hospital utilization trends are not well described. This study describes national trends for hospital discharges for FN among children with cancer for the year 2012, compared with the authors' previous analysis from 2009. Data were analyzed from the Kids' Inpatient Database (KID), an all-payer US hospital database, for 2012. Pediatric patients with cancer who had a discharge for FN were identified using age ≤19 years, urgent or emergent admit type, nontransferred, and a combination of International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes for fever and neutropenia. The authors evaluated factors associated with a "short length of stay" (SLOS). Sampling weights were used to permit national inferences. In 2012, children with cancer accounted for 1.8% of pediatric hospital discharges (n = 120,675), with 12.2% (n = 13,456) of cancer-related discharges meeting FN criteria. Two fifths of FN discharges had a SLOS, which accounted for $91 million (2015 US$) in hospital charges. The majority had no serious infections; most common infections were viral infection (9.6%) or upper respiratory infection (9.6%). Factors significantly associated with SLOS included having a diagnosis of ear infection (odds ratio [OR] = 1.54, 95% confidence interval [CI]: 1.16-2.03), soft tissue sarcoma (OR = 1.47, CI: 1.10-1.95), and Hodgkin lymphoma (OR = 1.51, CI: 1.09-2.10), as compared with not having those diagnoses. SLOS admissions continue to be rarely associated with serious infections, but contribute substantially to the burden of hospitalization for pediatric FN. Implementation of risk stratification schemas to identify patients who meet low-risk criteria may decrease financial burden.

Patient preferences in controlling access to their electronic health records: a prospective cohort study in primary care.

INTRODUCTION: Previous studies have measured individuals' willingness to share personal information stored in electronic health records (EHRs) with health care providers, but none has measured preferences among patients when they are allowed to determine the parameters of provider access. METHODS: Patients were given the ability to control access by doctors, nurses, and other staff in a primary care clinic to personal information stored in an EHR. Patients could restrict access to all personal data or to specific types of sensitive information, and could restrict access for a specific time period. Patients also completed a survey regarding their understanding of and opinions regarding the process. RESULTS: Of 139 eligible patients who were approached, 105 (75.5 %) were enrolled, and preferences were collected from all 105 (100 %). Sixty patients (57 %) did not restrict access for any providers. Of the 45 patients (43 %) who chose to limit the access of at least one provider, 36 restricted access only to all personal information in the EHR, while nine restricted access of some providers to a subset of the their personal information. Thirty-four (32.3 %) patients blocked access to all personal information by all doctors, nurses, and/or other staff, 26 (24.8 %) blocked access by all doctors and/or nurses, and five (4.8 %) denied access to all doctors, nurses, and staff. CONCLUSIONS: A significant minority of patients chose to restrict access by their primary care providers to personal information contained in an EHR, and few chose to restrict access to specific types of information. More research is needed to identify patient goals and understanding of the implications when facing decisions of this sort, and to identify the impact of patient education regarding information contained in EHRs and their use in the clinical care setting.