First name
David
Last name
Munson

Title

Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment.

Year of Publication

2022

Date Published

2022 Feb 16

ISSN Number

1098-4275

Abstract

<p><strong>BACKGROUND AND OBJECTIVES: </strong>Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implications for prognosis influence clinicians' decisions to recommend intensive versus palliative care.</p>

<p><strong>METHODS: </strong>We conducted a national study of neonatologists using a split sample experimental design. The questionnaire contained 4 clinical vignettes. Participants were randomly assigned to see one of 2 versions that varied only regarding whether they included the following genetic findings: (1) a variant of uncertain significance; (2) a genetic diagnosis that affects neurodevelopment but not acute survival; (3) a genetic versus nongenetic etiology of equally severe pathology; (4) a pending genetic testing result. Physicians answered questions about recommendations they would make for the patient described in each vignette.</p>

<p><strong>RESULTS: </strong>Vignette versions that included a variant of uncertain significance, a diagnosis foreshadowing neurodevelopmental impairment, or a genetic etiology of disease were all associated with an increased likelihood of recommending palliative rather than intensive care. A pending genetic test result did not have a significant effect on care recommendations.</p>

<p><strong>CONCLUSIONS: </strong>Findings from this study of hypothetical cases suggest neonatologists apply uncertain genetic findings or those that herald neurodevelopmental disability in problematic ways. As genetic testing expands, understanding how it is used in decision-making and educating clinicians regarding appropriate use are paramount.</p>

DOI

10.1542/peds.2021-052130

Alternate Title

Pediatrics

PMID

35169841

Title

Incidence and fate of device-related left pulmonary artery stenosis and aortic coarctation in small infants undergoing transcatheter patent ductus arteriosus closure.

Year of Publication

2020

Date Published

2020 Apr 27

ISSN Number

1522-726X

Abstract

<p><strong>OBJECTIVES: </strong>To evaluate short- and middle-term outcomes after transcatheter patent ductus arteriosus (TC-PDA) closure in small infants, specifically device-related left pulmonary artery (LPA) stenosis and aortic coarctation, risk factors, and changes over time.</p>

<p><strong>BACKGROUND: </strong>Recent studies have demonstrated successful transcatheter PDA (TC-PDA) closure in small infants. LPA stenosis and aortic coarctation have been seen after TC-PDA, but it is not clear whether device-related LPA/aortic obstruction persists.</p>

<p><strong>METHODS: </strong>A single-center retrospective study of infants ≤4 kg who underwent TC-PDA closure from February 1, 2007 to September 1, 2018 was performed, evaluating the incidence and risk factors for LPA stenosis and coarctation.</p>

<p><strong>RESULTS: </strong>Forty-four patients underwent successful TC-PDA with Amplatzer Vascular Plug II (AVPII; n = 30), Amplatzer Duct Occluder II-Additional Sizes (n = 10), Amplatzer Duct Occluder I (n = 3), and coil-filled AVPI (n = 1) devices, all via an antegrade approach. Median birthweight and procedural weight were 890 g (range: 490-3,250) and 2.8 kg (range: 1.2-4.0), respectively. Median follow-up was 0.7 years (range: 2 days-7 years). Thirty-eight patients had post-procedure echocardiograms assessing LPA/aortic obstruction. Of those, 17 had LPA flow acceleration/stenosis (≥1.5 m/s), which improved or resolved in all patients with available follow-up; 3 developed mild coarctation (&gt;2 m/s), which improved in the two with more than short-term follow-up; 4 developed mild flow acceleration (1.5-2 m/s) in the descending aorta, which resolved in three and increased in one (2.4 m/s). Flow acceleration in the LPA was associated with younger procedural age, larger PDA minimal diameter, and placement of a device other than the AVPII. There was no device-related mortality or need for reintervention.</p>

<p><strong>CONCLUSION: </strong>TC-PDA in small infants is effective, without significant complications. Device-related LPA/aortic obstruction can improve with time/growth.</p>

DOI

10.1002/ccd.28942

Alternate Title

Catheter Cardiovasc Interv

PMID

32339400

Title

Outbreak of Adenovirus in a Neonatal Intensive Care Unit: Critical Importance of Equipment Cleaning During Inpatient Ophthalmologic Examinations.

Year of Publication

2018

Date Published

2018 Sep 01

ISSN Number

1549-4713

Abstract

<p><strong>PURPOSE: </strong>Outbreaks of adenovirus in neonatal intensive care units (NICUs) can lead to widespread transmission and serious adverse outcomes. We describe the investigation, response, and successful containment of an adenovirus outbreak in a NICU associated with contaminated handheld ophthalmologic equipment used during retinopathy of prematurity (ROP) screening.</p>

<p><strong>DESIGN: </strong>Epidemiologic outbreak investigation.</p>

<p><strong>PARTICIPANTS: </strong>A total of 23 hospitalized neonates, as well as NICU staff and parents of affected infants.</p>

<p><strong>MAIN OUTCOME MEASURES: </strong>Routine surveillance identified an adenovirus outbreak in a level IV NICU in August 2016. Epidemiologic investigation followed, including chart review, staff interviews, and observations. Cases were defined as hospital-acquired adenovirus identified from any clinical specimen (NICU patient or employee) or compatible illness in a family member. Real-time polymerase chain reaction (PCR) and partial- and whole-genome sequencing assays were used for testing of clinical and environmental specimens.</p>

<p><strong>RESULTS: </strong>We identified 23 primary neonatal cases and 9 secondary cases (6 employees and 3 parents). All neonatal case-patients had respiratory symptoms. Of these, 5 developed pneumonia and 12 required increased respiratory support. Less than half (48%) had ocular symptoms. All neonatal case-patients (100%) had undergone a recent ophthalmologic examination, and 54% of neonates undergoing examinations developed adenovirus infection. All affected employees and parents had direct contact with infected neonates. Observations revealed inconsistent disinfection of bedside ophthalmologic equipment and limited glove use. Sampling of 2 handheld lenses and 2 indirect ophthalmoscopes revealed adenovirus serotype 3 DNA on each device. Sequence analysis of 16 neonatal cases, 2 employees, and 2 lenses showed that cases and equipment shared 100% identity across the entire adenovirus genome. Infection control interventions included strict hand hygiene, including glove use; isolation precautions; enhanced cleaning of lenses and ophthalmoscopes between all examinations; and staff furlough. We identified no cases of secondary transmission among neonates.</p>

<p><strong>CONCLUSIONS: </strong>Adenovirus outbreaks can result from use of contaminated ophthalmologic equipment. Even equipment that does not directly contact patients can facilitate indirect transmission. Patient-to-patient transmission can be prevented with strict infection control measures and equipment cleaning. Ophthalmologists performing inpatient examinations should take measures to avoid adenoviral spread from contaminated handheld equipment.</p>

DOI

10.1016/j.ophtha.2018.07.008

Alternate Title

Ophthalmology

PMID

30180976

Title

Integration of palliative care into the care of children with serious illness.

Year of Publication

2014

Number of Pages

318-25; quiz 326

Date Published

2014 Aug

ISSN Number

1526-3347

DOI

10.1542/pir.35-8-318

Alternate Title

Pediatr Rev

PMID

25086163

Title

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals.

Year of Publication

2014

Number of Pages

9

Date Published

03/2014

ISSN Number

1472-684X

Abstract

<p><strong>BACKGROUND: </strong>Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling.</p>

<p><strong>DISCUSSION: </strong>Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care.</p>

<p><strong>SUMMARY: </strong>The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.</p>

DOI

10.1186/1472-684X-13-9

Alternate Title

BMC Palliat Care

PMID

24625345

Title

Pediatric exposure to opioid and sedation medications during terminal hospitalizations in the United States, 2007-2011.

Year of Publication

2015

Number of Pages

587-93.e1

Date Published

03/2015

ISSN Number

1097-6833

Abstract

<p><strong>OBJECTIVE: </strong>To describe the use of opioids and sedatives to pediatric patients dying in the hospital in the 2 weeks preceding death.</p>

<p><strong>STUDY DESIGN: </strong>We conducted a retrospective study on opioid and sedation medication exposure among children who die in hospitals in the US by using large administrative data sources. We described patterns of exposure to these medications for deceased inpatients (&lt;21 years of age) between 2007 and 2011 (n = 37,459) and factors associated with the exposure. Multivariable logistic regression models were used to estimate the ORs.</p>

<p><strong>RESULTS: </strong>Overall, 74% patients were exposed to opioids or sedatives in the 14 days before death. Among patients with 6 or more hospital days before death, the daily exposure rate ranged from 73% (the sixth day before death) to 89% (the day of death). The most commonly used medications were fentanyl (52%), midazolam (44%), and morphine (40%). Older age (ORs 1.6-3.7), black race (ORs 0.8), longer hospital stay (ORs 6.6-9.3), receiving medical interventions (including mechanical ventilation, surgery, and stay in the intensive care unit, ORs 1.7-2.6), having comorbidities (ORs 1.7-2.4), and being hospitalized in children's hospitals (ORs 4.0-4.5) were associated with exposure of opioid and sedation medication on adjusted analysis.</p>

<p><strong>CONCLUSION: </strong>Although most pediatric patients terminally hospitalized are exposed to opioid and sedation medication, some patients do not receive such medications before death. Given that patient and hospital characteristics were associated with opioid/sedative exposure, these findings suggest areas of potential quality improvement and further research.</p>

DOI

10.1016/j.jpeds.2014.10.017

Alternate Title

J. Pediatr.

PMID

25454928

Title

Good-parent beliefs of parents of seriously ill children.

Year of Publication

2015

Number of Pages

39-47

Date Published

01/2015

ISSN Number

2168-6211

Abstract

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support.

OBJECTIVE: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes.

DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness.

MAIN OUTCOMES AND MEASURES: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics.

RESULTS: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions.

CONCLUSIONS AND RELEVANCE: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

DOI

10.1001/jamapediatrics.2014.2341

Alternate Title

JAMA Pediatr

PMID

25419676

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