First name
Chris
Last name
Feudtner

Title

End-of-life care quality for children with cancer who receive palliative care.

Year of Publication

2022

Number of Pages

e29841

Date Published

06/2022

ISSN Number

1545-5017

Abstract

BACKGROUND: We previously developed stakeholder-informed quality measures to assess end-of-life care quality for children with cancer. We sought to implement a subset of these quality measures in the multi-center pediatric palliative care (PPC) database.

PROCEDURES: We utilized the Shared Data and Research database to evaluate the proportion of childhood cancer decedents from 2017-2021 who, in the last 30 days of life, avoided chemotherapy, mechanical ventilation, intensive care unit admissions, and > 1 hospital admission; were enrolled in hospice services, and reported ≤ 2 highly distressing symptoms. We then explored patient factors associated with the attainment of quality benchmarks.

RESULTS: Across 79 decedents, 82% met ≥ 4 quality benchmarks. Most (76%) reported > 2 highly distressing symptoms; 17% were enrolled in hospice. In univariable analyses, patients with an annual household income ≤$50,000 had lower odds of hospice enrollment and avoidance of mechanical ventilation or intensive care unit admissions near end of life (odds ratio [OR] 0.10 [95% confidence interval (C.I.) 0.01, 0.86], p = 0.04; OR 0.13 [0.02, 0.64], p = 0.01; OR 0.36 [0.13, 0.98], p = 0.04, respectively). In multivariable analyses, patients with an income ≤$50,000 remained less likely to enroll in hospice, after adjusting for cancer type (OR 0.10 [0.01, 0.87]; p = 0.04).

CONCLUSIONS: Childhood cancer decedents who received PPC met a large proportion of quality measures near the end of their life. Yet, many reported highly distressing symptoms. Moreover, patients with lower household incomes appeared less likely to enroll in hospice and more likely to receive intensive hospital services near the end of life. This study identifies opportunities for palliative oncology quality improvement.

DOI

10.1002/pbc.29841

Alternate Title

Pediatr Blood Cancer

PMID

35686746

Title

Home-Based Care for Children with Serious Illness: Ecological Framework and Research Implications.

Year of Publication

2022

Date Published

07/2022

ISSN Number

2227-9067

Abstract

Care for U.S. children living with serious illness and their families at home is a complex and patchwork system. Improving home-based care for children and families requires a comprehensive, multilevel approach that accounts for and examines relationships across home environments, communities, and social contexts in which children and families live and receive care. We propose a multilevel conceptual framework, guided by Bronfenbrenner's ecological model, that conceptualizes the complex system of home-based care into five levels. Levels 1 and 2 contain patient and family characteristics. Level 3 contains factors that influence family health, well-being, and experience with care in the home. Level 4 includes the community, including community groups, schools, and providers. Level 5 includes the broader regional system of care that impacts the care of children and families across communities. Finally, care coordination and care disparities transcend levels, impacting care at each level. A multilevel ecological framework of home-based care for children with serious illness and families can be used in future multilevel research to describe and test hypotheses about aspects of this system of care, as well as to inform interventions across levels to improve patient and family outcomes.

DOI

10.3390/children9081115

Alternate Title

Children (Basel)

PMID

35892618

Title

Measures of Utility Among Studies of Genomic Medicine for Critically Ill Infants: A Systematic Review.

Year of Publication

2022

Number of Pages

e2225980

Date Published

08/2022

ISSN Number

2574-3805

Abstract

Importance: Genomic medicine holds promise to revolutionize care for critically ill infants by tailoring treatments for patients and providing additional prognostic information to families. However, measuring the utility of genomic medicine is not straightforward and has important clinical and ethical implications.

Objective: To review the ways that researchers measure or neglect to measure the utility of genomic medicine for critically ill infants.

Evidence Review: This systematic review included prospective full-text studies of genomic medicine of both whole exome and genome sequencing in critically ill infants younger than 1 year. PubMed, Embase, Scopus, and Cochrane Library databases, the Cochrane Database of Systematic Reviews, and the ClinicalTrials.gov register were searched with an English language restriction for articles published from the inception of each database through May 2022. Search terms included variations of the following: gene, sequencing, intensive care, critical care, and infant. From the included articles, information on how utility was defined and measured was extracted and synthesized. Information was also extracted from patient cases that authors highlighted by providing additional information. Spearman rank-order correlation was used to evaluate the association between study size and utility.

Findings: Synthesized data from the 21 included studies reflected results from 1654 patients. A mean of 46% (range, 15%-72%) of patients had a positive genetic test result, and a mean of 37% (range, 13%-61%) met the criteria for experiencing utility. Despite heterogeneity in how studies measured and reported utility, a standardized framework was created with 5 categories of utility: treatment change, redirection of care, prognostic information, reproductive information, and screening or subspecialty referral. Most studies omitted important categories of utility, notably personal utility (patient-reported benefits) (20 studies [95%]), utility of negative or uncertain results (15 [71%]), and disutility (harms) (20 [95%]). Studies disproportionally highlighted patient cases that resulted in treatment change. Larger studies reported substantially lower utility (r = -0.65; P = .002).

Conclusions and Relevance: This systematic review found that genomic medicine offered various categories of utility for a substantial proportion of critically ill infants. Studies measured utility in heterogeneous ways and focused more on documenting change than assessing meaningful benefit. Authors' decisions about which cases to highlight suggest that some categories of utility may be more important than others. A more complete definition of utility that is used consistently may improve understanding of potential benefits and harms of genetic medicine.

DOI

10.1001/jamanetworkopen.2022.25980

Alternate Title

JAMA Netw Open

PMID

35947384

Title

Age- and sex-specific rates of gall bladder disease in children with sickle cell disease.

Year of Publication

2022

Number of Pages

e29863

Date Published

08/2022

ISSN Number

1545-5017

Abstract

BACKGROUND: Children with sickle cell disease (SCD) have an increased risk for gallstones due to chronic hyperbilirubinemia from hemolysis. Although gallstones are a known complication, there is variability in estimates of disease burden and uncertainty in the association between sex and gall bladder disease (GBD).

METHODS: This was a retrospective cohort study of children with SCD using administrative claims data (January 1, 2014-December 31, 2018). Population-averaged multivariable panel-data logistic regression models were used to evaluate the association between GBD clinical encounters (outcome) and two exposures (age and sex). Annual GBD risk was calculated using predictive margins, adjusting for disease severity, transfusion frequency, and hydroxyurea exposure.

RESULTS: A total of 13,745 individuals (of 21,487 possible) met inclusion criteria. The population was evenly split across sex (49.5% female) with predominantly Medicaid insurance (69%). A total of 946 individuals (6.9%) had GBD, 432 (3.1%) had a gallstone complication, and 487 (3.5%) underwent cholecystectomy. The annual risk of GBD rose nonlinearly from 1 to 5% between ages 1 and 19 years with no difference between males and females. Cholecystectomy occurred primarily in individuals with GBD (87%), and neither age nor sex was associated with cholecystectomy in this population. High disease severity (compared with low) more than doubled the annual risk of GBD at all ages.

CONCLUSIONS: GBD is associated with age but not sex in children with SCD. Neither age nor sex is associated with risk of cholecystectomy. High disease severity increases the rate of GBD at all ages.

DOI

10.1002/pbc.29863

Alternate Title

Pediatr Blood Cancer

PMID

35997530

Title

Pediatricians' Experience with Clinical Ethics Consultation: A National Survey.

Year of Publication

2015

Number of Pages

919-924.e1

Date Published

2015 Oct

ISSN Number

1097-6833

Abstract

OBJECTIVE: To conduct a national survey of pediatricians' access to and experience with clinical ethics consultation.

STUDY DESIGN: We surveyed a randomly selected sample of 3687 physician members of the American Academy of Pediatrics. We asked about their experiences with ethics consultation, the helpfulness of and barriers to consultation, and ethics education. Using a discrete choice experiment with maximum difference scaling, we evaluated which traits of ethics consultants were most valuable.

RESULTS: Of the total sample of 3687 physicians, 659 (18%) responded to the survey. One-third of the respondents had no experience with clinical ethics consultation, and 16% reported no access to consultation. General pediatricians were less likely to have access. The vast majority (90%) who had experience with consultation had found it helpful. Those with fewer years in practice were more likely to have training in ethics. The most frequently reported issues leading to consultation concerned end-of-life care and conflicts with patients/families or among the team. Intensive care unit physicians were more likely to have requested consultation. Mediation skills and ethics knowledge were the most highly valued consultant characteristics, and representing the official position of the hospital was the least-valued characteristic.

CONCLUSION: There is variability in pediatricians' access to ethics consultation. Most respondents reported that consultation had been helpful in the past. Determining ethically appropriate end-of-life care and mediation of disagreements are common reasons that pediatricians request consultation.

DOI

10.1016/j.jpeds.2015.06.047

Alternate Title

J. Pediatr.

PMID

26210945

Title

Tall Man lettering and potential prescription errors: a time series analysis of 42 children's hospitals in the USA over 9 years.

Year of Publication

2016

Number of Pages

233-40

Date Published

2016 Apr

ISSN Number

2044-5423

Abstract

BACKGROUND: Despite the widespread implementation of Tall Man lettering, little evidence exists regarding whether this technique has reduced drug errors due to look-alike sound-alike (LA-SA) drug names. This study evaluated rates of potential LA-SA drug errors in the drug management process through to the point of dispensing before and after implementation of Tall Man lettering in 2007.

METHODS: We used detailed pharmacy data for paediatric inpatients (<21 years old) from 42 children's hospitals in 2004-2012. After prespecifying a set of 8 potential LA-SA drug error patterns we searched within each hospitalisation for the occurrence of one of these patterns for a total of 12 LA-SA drug pairs deemed highly relevant to paediatric inpatients. To assess for potential change of error rates before and after Tall Man lettering implementation, we performed segmented regression analyses for each of 11 LA-SA drug pairs (because 1 pair had no detected potential errors) and for the overall total errors of all 11 LA-SA drug pairs.

RESULTS: Among 1 676 700 hospitalisations, no statistically significant change was detected for either the intercept or the slope of LA-SA error rate for each of the 11 drug pairs or for the combined error rate. In a sensitivity analysis of the moving average of the potential error rate over the entire study period, no downward trend in potential LA-SA drug error rates was evident over any time period 2004 onwards.

CONCLUSIONS: Implementation of Tall Man lettering in 2007 was not associated with a reduction in the potential LA-SA error rate. Whether Tall Man lettering is effective in clinical practice warrants further study.

DOI

10.1136/bmjqs-2015-004562

Alternate Title

BMJ Qual Saf

PMID

26534995

Title

Childhood Asthma Hospital Discharge Medication Fills and Risk of Subsequent Readmission.

Year of Publication

2015

Number of Pages

1121-7

Date Published

05/2015

ISSN Number

1097-6833

Abstract

OBJECTIVE: To assess the relationship between posthospitalization prescription fills for recommended asthma discharge medication classes and subsequent hospital readmission.

STUDY DESIGN: This was a retrospective cohort analysis of Medicaid Analytic Extract files from 12 geographically diverse states from 2005-2007. We linked inpatient hospitalization, outpatient, and prescription claims records for children ages 2-18 years with an index hospitalization for asthma to identify those who filled a short-acting beta agonist, oral corticosteroid, or inhaled corticosteroid within 3 days of discharge. We used a multivariable extended Cox model to investigate the association of recommended medication fills and hospital readmission within 90 days.

RESULTS: Of 31,658 children hospitalized, 55% filled a beta agonist prescription, 57% an oral steroid, and 37% an inhaled steroid. Readmission occurred for 1.3% of patients by 14 days and 6.3% by 90 days. Adjusting for patient and billing provider factors, beta agonist (hazard ratio [HR] 0.67, 95% CI 0.51, 0.87) and inhaled steroid (HR 0.59, 95% CI 0.42, 0.85) fill were associated with a reduction in readmission at 14 days. Between 15 and 90 days, inhaled steroid fill was associated with decreased readmission (HR 0.87, 95% CI 0.77, 0.98). Patients who filled all 3 medications had the lowest readmission hazard within both intervals.

CONCLUSIONS: Filling of beta agonists and inhaled steroids was associated with diminished hazard of early readmission. For inhaled steroids, this effect persisted up to 90 days. Efforts to improve discharge care for asthma should include enhancing recommended discharge medication fill rates.

DOI

10.1016/j.jpeds.2014.12.019

Alternate Title

J. Pediatr.

PMID

25641244

Title

Practice Variation in Use of Neuroimaging Among Infants With Concern for Abuse Treated in Children's Hospitals.

Year of Publication

2022

Number of Pages

e225005

Date Published

2022 Apr 01

ISSN Number

2574-3805

Abstract

<p><strong>Importance: </strong>Infants who appear neurologically well and have fractures concerning for abuse are at increased risk for clinically occult head injuries. Evidence of excess variation in neuroimaging practices when abuse is suspected may indicate opportunity for quality and safety improvement.</p>

<p><strong>Objective: </strong>To quantify neuroimaging practice variation across children's hospitals among infants with fractures evaluated for abuse, with the hypothesis that hospitals would vary substantially in neuroimaging practices. As a secondary objective, factors associated with neuroimaging use were identified, with the hypothesis that age and factors associated with potential biases (ie, payer type and race or ethnicity) would be associated with neuroimaging use.</p>

<p><strong>Design, Setting, and Participants: </strong>This cross-sectional study included infants with a femur or humerus fracture or both undergoing abuse evaluation at 44 select US children's hospitals in the Pediatric Health Information System (PHIS) from January 1, 2016, through March 30, 2020, including emergency department, observational, and inpatient encounters. Included infants were aged younger than 12 months with a femur or humerus fracture or both without overt signs or symptoms of head injury for whom a skeletal survey was performed. To focus on infants at increased risk for clinically occult head injuries, infants with billing codes suggestive of overt neurologic signs or symptoms were excluded. Multivariable logistic regression was used to investigate demographic, clinical, and temporal factors associated with use of neuroimaging. Marginal standardization was used to report adjusted percentages of infants undergoing neuroimaging by hospital and payer type. Data were analyzed from March 2021 through January 2022.</p>

<p><strong>Exposures: </strong>Covariates included age, sex, race and ethnicity, payer type, fracture type, presentation year, and hospital.</p>

<p><strong>Main Outcomes and Measures: </strong>Use of neuroimaging by CT or MRI.</p>

<p><strong>Results: </strong>Of 2585 infants with humerus or femur fracture or both undergoing evaluations for possible child abuse, there were 1408 (54.5%) male infants, 1726 infants (66.8%) who were publicly insured, and 1549 infants (59.9%) who underwent neuroimaging. The median (IQR) age was 6.1 (3.2-8.3) months. There were 748 (28.9%) Black non-Hispanic infants, 426 (16.5%) Hispanic infants, 1148 (44.4%) White non-Hispanic infants. In multivariable analyses, younger age (eg, odds ratio [OR] for ages &lt;3 months vs ages 9 to &lt;12 months, 13.2; 95% CI, 9.54-18.2; P &lt; .001), male sex (OR, 1.47; 95% CI, 1.22-1.78; P &lt; .001), payer type (OR for public vs private insurance, 1.48; 95% CI, 1.18-1.85; P = .003), fracture type (OR for femur and humerus fracture vs isolated femur fracture, 5.36; 95% CI, 2.11-13.6; P = .002), and hospital (adjusted range in use of neuroimaging, 37.4% [95% CI 21.4%-53.5%] to 83.6% [95% CI 69.6%-97.5%]; P &lt; .001) were associated with increased use of neuroimaging, but race and ethnicity were not. Publicly insured infants were more likely to undergo neuroimaging (62.0%; 95% CI, 60.0%-64.1%) than privately insured infants (55.1%; 95% CI, 51.8%-58.4%) (P = .001).</p>

<p><strong>Conclusions and Relevance: </strong>This study found that hospitals varied in neuroimaging practices among infants with concern for abuse. Apparent disparities in practice associated with insurance type suggest opportunities for quality, safety, and equity improvement.</p>

DOI

10.1001/jamanetworkopen.2022.5005

Alternate Title

JAMA Netw Open

PMID

35442455

Title

Ethics Considerations Regarding Artificial Womb Technology for the Fetonate.

Year of Publication

2022

Number of Pages

1-12

Date Published

2022 Apr 01

ISSN Number

1536-0075

Abstract

<p>Since the early 1980's, with the clinical advent of in&nbsp;vitro fertilization resulting in so-called "test tube babies," a wide array of ethical considerations and concerns regarding artificial womb technology (AWT) have been described. Recent breakthroughs in the development of extracorporeal neonatal life support by means of AWT have reinitiated ethical interest about this topic with a sense of urgency. Most of the recent ethical literature on the topic, however, pertains not to the more imminent scenario of a physiologically improved method of neonatal care through AWT, but instead to the remote scenario of "complete ectogenesis" that imagines human gestation occurring entirely outside of the womb. This scoping review of the ethical literature on AWT spans from more abstract concerns about complete ectogenesis to more immediate concerns about the soon-to-be-expected clinical life support of what we term the fetal neonate or fetonate. Within an organizing framework of different stages of human gestational development, from conception to the viable premature infant, we discuss both already identified and newly emerging ethical considerations and concerns regarding AWT and the care of the fetonate.</p>

DOI

10.1080/15265161.2022.2048738

Alternate Title

Am J Bioeth

PMID

35362359

Title

Magnetic resonance lymphangiography in post-Fontan palliation patients with MR non-conditional cardiac electronic devices: An institutional experience.

Year of Publication

2022

Number of Pages

43-52

Date Published

2022 Feb 23

ISSN Number

1873-4499

Abstract

<p>Magnetic resonance imaging (MRI) is a routinely used imaging modality for the diagnosis and treatment planning of many health conditions in children and adults. Yet, its use has been limited in many institutions for patients with cardiac implantable electronic devices (CIEDs) due to safety concerns. Current evidence relates primarily to devices with transvenous leads. However, patients with complex cardiac anatomy and palliative surgery procedures often require epicardial pacemakers. To date, very few studies have addressed MRI safety considerations with non-conditional CIEDs or abandoned epicardial leads in infants, and to our knowledge, this is the first report that shows Fontan palliation patients who underwent Dynamic Contrast enhanced MR Lymphangiography (DCMRL) with these types of devices. We present our institutional experience with five cases where a DCMRL was safely performed in three children and two adults with Fontan palliation to evaluate their lymphatic anatomy and guide interventional procedures. Regarding our brief experience, we concluded that DCMRL may be considered in post-Fontan patients with non-conditional CIEDs, including epicardial leads, seeking the best diagnostic and treatment options available. Institutional protocols must be revised in advance to perform this technique in a controlled setting.</p>

DOI

10.1016/j.clinimag.2022.02.016

Alternate Title

Clin Imaging

PMID

35334301

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