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Journal of Pediatrics, The

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Associations between Infant and Parent Characteristics and Measures of Family Well-Being in Neonates with Seizures: A Cohort Study - 20/05/20

Doi : 10.1016/j.jpeds.2020.02.024 
Linda S. Franck, RN, PhD 1, ⁎ , Renée A. Shellhaas, MD, MS 2, Monica Lemmon, MD 3, Julie Sturza, MPH 2, Janet S. Soul, MDCM 4, Taeun Chang, MD 5, Courtney J. Wusthoff, MD, MS 6, Catherine J. Chu, MD 7, Shavonne L. Massey, MD 8, Nicholas S. Abend, MD, MSCE 8, 9, Cameron Thomas, MD, MS 10, 11, Elizabeth E. Rogers, MD 12, Charles E. McCulloch, PhD 13, Katie Grant 14, Lisa Grossbauer, MS 15, Kamil Pawlowski, MS 16, Hannah C. Glass, MDCM, MAS 17
on behalf of the

Neonatal Seizure Registry study group∗

  List of additional members of the Neonatal Seizure Registry (NSR) study group is available at www.jpeds.com (Appendix).
Ronnie Guillet, MD, Marty Barnes, Tammy Tsuchida, MD, Adam Numis, MD, M. Roberta Cilio, MD, Sonia L. Bonifacio

1 Department of Family Health Care Nursing, University of California San Francisco, San Francisco, CA 
2 Department of Pediatrics, University of Michigan, Ann Arbor, MI 
3 Division of Pediatric Neurology and Developmental Medicine, Department of Pediatrics, Duke University School of Medicine, Durham, NC 
4 Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA 
5 Department of Neurology, Children's National Hospital, George Washington University School of Medicine and Health Sciences, Washington, DC 
6 Departments of Neurology and Pediatrics, Stanford University, Palo Alto, CA 
7 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA 
8 Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA 
9 Departments of Anesthesia and Critical Care Medicine, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA 
10 Department of Pediatrics, University of Cincinnati, Cincinnati, OH 
11 Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 
12 Department of Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CA 
13 Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, CA 
14 NSR Parent Partner, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 
15 NSR Parent Partner, Children's Hospital of Philadelphia, Philadelphia, PA 
16 NSR Parent Partner, UCSF Benioff Children's Hospital, San Francisco, CA 
17 Departments of Neurology and Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CA 

∗Reprint requests: Linda S. Franck, RN, PhD, Department of Family Health Care Nursing, 2 Koret Way, N411F, Box 0606, San Francisco, CA 94143.Department of Family Health Care Nursing2 Koret WayN411FBox 0606San FranciscoCA94143

Abstract

Objective

To characterize and determine risk factors for key dimensions of well-being at hospital discharge in families of neonates with acute symptomatic seizures.

Study design

This prospective, observational cohort study enrolled 144 parent-infant dyads among neonates with acute symptomatic seizures from 9 pediatric hospitals in the Neonatal Seizure Registry. One parent per family completed a discharge survey, which included measures of anxiety and depression, health-related quality of life, and impact on the family. Multivariable regression analyses adjusted for site were constructed to examine parent and infant characteristics associated with well-being.

Results

At discharge, 54% of parents reported symptoms of anxiety and 32% reported symptoms of depression. Parents of infants with hypoxic-ischemic encephalopathy reported more depression and worse quality of life than parents of infants with other seizure etiologies. Parental quality of life was also lower with greater infant age at discharge. A higher level of maternal education was associated with greater impact on the family. All these differences were medium to large effect sizes, ranging from 0.52 to 0.78.

Conclusions

Symptoms of anxiety and depression are common in parents of infants with neonatal seizures, and several parent and infant characteristics are associated with poorer parental quality of life and family well-being. These findings are a call to action to improve mental health screening and services for parents of infants with neonatal seizures.

Le texte complet de cet article est disponible en PDF.

Keywords : anxiety, depression, quality of life, family impact, hypoxic-ischemic encephalopathy, perinatal ischemic stroke, intracranial hemorrhage

Abbreviations : EEG, HADS, HIE, IOF, ICH, NICU, QOL, WHOQOL-BREF


Plan


 Supported by the Patient-Centered Outcomes Research Institute (PCORI contract 2015C2-1507-31187, NCT02789176). R.S. receives royalties from UpToDate for authorship of topics related to neonatal seizures, has served as a consultant for the Epilepsy Study Consortium and serves on the Editorial Board for The Journal of Pediatrics. N.A receives royalties from Demos publishing. J.G. serves as a consultant for GlaxoSmithKline, Codagenix, Array BioPharma, and Verseau Therapeutics and receives research support from GlaxoSmithKline, Eli Lilly, and Array BioPharma for the study of the breast tumor microenvironment. K.P. is an employee of iRhythm technologies. The other authors declare no conflicts of interest.


© 2020  Elsevier Inc. Tous droits réservés.
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Vol 221

P. 64 - juin 2020 Retour au numéro
Article précédent Article précédent
  • Long-term Healthcare Utilization by Medicaid Enrolled Children with Neonatal Abstinence Syndrome
  • Walter M. Taylor, Yewei Lu, Shuang Wang, Lena S. Sun, Guohua Li, Caleb Ing
| Article suivant Article suivant
  • What Parents Know Matters: Parental Knowledge at Birth Predicts Caregiving Behaviors at 9 Months
  • Christy Y.Y. Leung, Dana L. Suskind

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