Associations between Infant and Parent Characteristics and Measures of Family Well-Being in Neonates with Seizures: A Cohort Study

Franck, Linda S.; Shellhaas, Renée A.; Lemmon, Monica E.; Sturza, Julie; Soul, Janet S.; Chang, Taeun; Wusthoff, Courtney J.; Chu, Catherine J.; Massey, Shavonne L.; Abend, Nicholas S.; Thomas, Cameron; Rogers, Elizabeth E.; McCulloch, Charles E.; Grant, Katie; Grossbauer, Lisa; Pawlowski, Kamil; Glass, Hannah C.; Guillet, Ronnie; Barnes, Marty; Tsuchida, Tammy N.; Numis, Adam; Cilio, Maria Roberta; Bonifacio, Sonia L.

doi:10.1016/j.jpeds.2020.02.024

Cited by 21 publications

(17 citation statements)

References 47 publications

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“…21 22 Parents of infants with seizures associated with HIE have more mental health problems with symptoms of anxiety and depression. 23 Centralisation of CCs has resulted in many infants requiring transportation soon after their insult and potentially during a period of increased susceptibility to secondary brain injury. It is unclear if the transport of newborns with HIE impacts on their outcomes.…”

Section: Introductionmentioning

confidence: 99%

Outcomes of neonatal hypoxic-ischaemic encephalopathy in centres with and without active therapeutic hypothermia: a nationwide propensity score-matched analysis

Shipley

Mistry

Sharkey

2021

Arch Dis Child Fetal Neonatal Ed

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ObjectiveTherapeutic hypothermia (TH) for neonatal hypoxic-ischaemic encephalopathy (HIE), delivered mainly in tertiary cooling centres (CCs), reduces mortality and neurodisability. It is unknown if birth in a non-cooling centre (non-CC), without active TH, impacts short-term outcomes.DesignRetrospective cohort study using National Neonatal Research Database and propensity score-matching.SettingUK neonatal units.PatientsInfants ≥36 weeks gestational age with moderate or severe HIE admitted 2011–2016.InterventionsBirth in non-CC compared with CC.Main outcome measuresPrimary outcome was survival to discharge without recorded seizures. Secondary outcomes were recorded seizures, mortality and temperature on arrival at CCs following transfer.Results5059 infants were included with 2364 (46.7%) born in non-CCs. Birth in a CC was associated with improved survival without seizures (35.1% vs 31.8%; OR 1.15, 95% CI 1.02 to 1.31; p=0.02), fewer seizures (60.7% vs 64.6%; OR 0.84, 95% CI 0.75 to 0.95, p=0.007) and similar mortality (15.8% vs 14.4%; OR 1.11, 95% CI 0.93 to 1.31, p=0.20) compared with birth in a non-CC. Matched infants from level 2 centres only had similar results, and birth in CCs was associated with greater seizure-free survival compared with non-CCs. Following transfer from a non-CC to a CC (n=2027), 1362 (67.1%) infants arrived with a recorded optimal therapeutic temperature but only 259 (12.7%) of these arrived within 6 hours of birth.ConclusionsAlmost half of UK infants with HIE were born in a non-CC, which was associated with suboptimal hypothermic treatment and reduced seizure-free survival. Provision of active TH in non-CC hospitals prior to upward transfer warrants consideration.

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Section: Introductionmentioning

confidence: 99%

Outcomes of neonatal hypoxic-ischaemic encephalopathy in centres with and without active therapeutic hypothermia: a nationwide propensity score-matched analysis

Shipley

Mistry

Sharkey

2021

Arch Dis Child Fetal Neonatal Ed

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“…Respondents' IFS scores were noticeably higher than those identified in research conducted before the COVID-19 pandemic. 22,24,36 Although we did not specify the pandemic as a variable, data were collected during the pandemic while parents were coping with their infant's illness and NICU hospitalization. Confidence scores were at or below the clinical cut-off index (<39) and lower than those among parents with high-risk infants prior to the COVID-19 pandemic.…”

Section: Discussionmentioning

confidence: 99%

“…Yet, our results may represent general variations in parent experiences since it is known that a NICU hospitalization is traumatic and overwhelming for families. 17,24,38,40 Healthcare providers working with families in the NICU must consider the additional challenges that the COVID-19 pandemic has brought to family life. Our findings indicate that families may be uniquely affected by the pandemic and its sequelae.…”

Section: Discussionmentioning

confidence: 99%

“…26 The IFS is validated for use with families to evaluate the effects of illness and/or disability across a range of conditions, including preterm birth, 22 congenital birth defects, 28 and neonatal seizures. 24 The IFS's total score ranges from 15 to 60 points and is calculated by summing responses to the 15 items, all of which are scored on a 4-point Likert-type scale. A higher score indicates greater family impact (e.g., more changes or disruption to family life and routines) as a result of a child's illness.…”

Section: Impact On Familymentioning

confidence: 99%

“…[19][20][21] Social isolation, disruption to family routines, and unpaid time off from work were associated with negative impacts on family life. [22][23][24] We adapted a parenting and caregiving model to address our main research question, 25 "how was family life impacted by an NICU hospitalization during the COVID-19 pandemic, and what characteristics were associated with greater impact?" As presented in ►Fig.…”

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confidence: 99%

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Impacts of Neonatal Hospitalization on Families during the 2019 Coronavirus Pandemic

et al. 2021

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Objective Limited data are available regarding family and financial well-being among parents whose infants were hospitalized during the 2019 coronavirus (COVID-19) pandemic. The study objective was to evaluate the family and financial well-being of parents whose infants were hospitalized in the neonatal intensive care unit (NICU) during COVID-19. Study Design Parents were recruited for this online, cross-sectional survey via support groups on social media. Data collection was completed between May 18, 2020 and July 31, 2020. The final sample consisted of 178 parents, who had an infant hospitalized in an NICU between February 1, 2020 and July 31, 2020. The primary outcomes were impact on family life and financial stability, as measured by the Impact on Family scale, an instrument that evaluates changes to family life as a result of infant or childhood illness. Results Of the 178 parent respondents, 173 (97%) were mothers, 107 (59.4%) were non-Hispanic White, and 127 (69.5%) of the infants were born prematurely. Parents reported significant family impact and greater financial difficulty. Extremely premature infants, lower household income, parent mental health, and lower parental confidence were predictive of greater impacts on family life. Conclusion Parents reported significant family and financial impacts during their infant's hospitalization amid COVID-19. Further studies are needed to guide clinical practice and inform family-supportive resources that can mitigate consequences to family well-being. Key Points

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Safety of Early Discontinuation of Antiseizure Medication After Acute Symptomatic Neonatal Seizures

et al. 2021

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IMPORTANCE Antiseizure medication (ASM) treatment duration for acute symptomatic neonatal seizures is variable. A randomized clinical trial of phenobarbital compared with placebo after resolution of acute symptomatic seizures closed early owing to low enrollment.OBJECTIVE To assess whether ASM discontinuation after resolution of acute symptomatic neonatal seizures and before hospital discharge is associated with functional neurodevelopment or risk of epilepsy at age 24 months. DESIGN, SETTING, AND PARTICIPANTSThis comparative effectiveness study included 303 neonates with acute symptomatic seizures (282 with follow-up data and 270 with the primary outcome measure) from 9 US Neonatal Seizure Registry centers, born from July 2015 to March 2018. The centers all had level IV neonatal intensive care units and comprehensive pediatric epilepsy programs. Data were analyzed from June 2020 to February 2021.EXPOSURES The primary exposure was duration of ASM treatment dichotomized as ASM discontinued vs ASM maintained at the time of discharge from the neonatal seizure admission. To enhance causal association, each outcome risk was adjusted for propensity to receive ASM at discharge. Propensity for ASM maintenance was defined by a logistic regression model including seizure cause, gestational age, therapeutic hypothermia, worst electroencephalogram background, days of electroencephalogram seizures, and discharge examination (all P Յ .10 in a joint model except cause, which was included for face validity). MAIN OUTCOMES AND MEASURESFunctional neurodevelopment was assessed by the Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS) at 24 months powered for propensity-adjusted noninferiority of early ASM discontinuation. Postneonatal epilepsy, a prespecified secondary outcome, was defined per International League Against Epilepsy criteria, determined by parent interview, and corroborated by medical records.RESULTS Most neonates (194 of 303 [64%]) had ASM maintained at the time of hospital discharge. Among 270 children evaluated at 24 months (mean [SD], 23.8 [0.7] months; 147 [54%] were male), the WIDEA-FS score was similar for the infants whose ASMs were discontinued (101 of 270 [37%]) compared with the infants with ASMs maintained (169 of 270 [63%]) at discharge (median score, 165 [interquartile range, 150-175] vs 161 [interquartile range, 129-174]; P = .09). The propensity-adjusted average difference was 4 points (90% CI, −3 to 11 points), which met the a priori noninferiority limit of −12 points. The epilepsy risk was similar (11% vs 14%; P = .49), with a propensity-adjusted odds ratio of 1.5 (95% CI, 0.7-3.4; P = .32). CONCLUSIONS AND RELEVANCEIn this comparative effectiveness study, no difference was found in functional neurodevelopment or epilepsy at age 24 months among children whose ASM was discontinued vs maintained at hospital discharge after resolution of acute symptomatic neonatal seizures. These results support discontinuation of ASM prior to hospital discharge for most infants wit...

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Associations between Infant and Parent Characteristics and Measures of Family Well-Being in Neonates with Seizures: A Cohort Study

Cited by 21 publications

References 47 publications

Outcomes of neonatal hypoxic-ischaemic encephalopathy in centres with and without active therapeutic hypothermia: a nationwide propensity score-matched analysis

Outcomes of neonatal hypoxic-ischaemic encephalopathy in centres with and without active therapeutic hypothermia: a nationwide propensity score-matched analysis

Impacts of Neonatal Hospitalization on Families during the 2019 Coronavirus Pandemic

Safety of Early Discontinuation of Antiseizure Medication After Acute Symptomatic Neonatal Seizures

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