Recognition, identification, and diagnosis announcement of neonatal arterial ischemic stroke: A combined exploratory quantitative and qualitative study on parents' lived experiences

Article Article scientifique Article Recognition, identification, and diagnosis announcement of neonatal arterial ischemic stroke: A combined exploratory quantitative and qualitative study on parents' lived experiences eng 2021-03-11 author Leal Martins Cindy Pediatric Neurology Unit, Paediatric subspecialties Service, Geneva University Hospitals, Rue Willy-Donzé 6, 1211 Geneva 14, Switzerland. 780362 author Chabrier Stéphane CHU de Saint-Étienne, French Center for Paediatric Stroke, Inserm U1059, CIC1408, 42055 Saint-Étienne, France. author Fluss Joel Victor Pediatric Neurology Unit, Paediatric subspecialties Service, Geneva University Hospitals, Rue Willy-Donzé 6, 1211 Geneva 14, Switzerland. Electronic address: joel.fluss@hcuge.ch. 28801 Département de Pédiatrie, Gynécologie et Obstétrique (PETRI) 285-290 10.1016/j.arcped.2021.02.002 33715932 0929-693X https://www.sciencedirect.com/science/article/pii/S0929693X2100018X Objectives: To examine the epidemiology of neonatal arterial ischemic stroke (NAIS) and the chronology of care from early reported manifestations to formal diagnosis obtained by imaging. To explore how parents experienced the sequence of events, their own perception of potential diagnostic delay, diagnosis announcement, and prognosis discussion, and their current view of their child's quality of life. Methods: We retrospectively analyzed data of all NAIS cases that have been treated in our institution. Quantitative data came from both newborns' and mothers' medical records. Qualitative data were collected from parents in semi-structured interviews based on a standardized questionnaire composed of open-ended questions. Results: A total of 14 neonates were treated for NAIS in our institution between January 2008 and December 2017. The incidence of NAIS during this period was one out of 4258 births. The majority of neonates presented within 48 hours with a mean of 27h after birth, most often in the form of repetitive focal clonus (13/14). The mean time before diagnosis consideration and confirmation was 5 and 33h, respectively. Late consideration of early reported symptoms was identified as the main source of delay. Despite good reported health outcome, NAIS was associated with significant acute and long-standing parental emotional stress. Conclusion: Maternity hospital caregivers' awareness of NAIS is crucial to reach early diagnosis. Improving this aspect would not only allow better early management, but also make it possible to set up acute neuroprotective strategies. Clinicians should be attentive to the modalities of diagnosis and prognosis announcements, which are associated with considerable stress and misconceptions. Diagnosis delay Neonatal arterial ischemic stroke Parental perception Prognostication Quality of life Brain Ischemia / complications Brain Ischemia / diagnosis Delayed Diagnosis Female Humans Infant, Newborn Ischemic Stroke / diagnosis Male Parents / psychology Quality of Life Retrospective Studies Stroke / diagnosis Stroke / etiology Dewey 618 58 Département de pédiatrie, gynécologie et obstétrique 223 false Archives de pédiatrie 28 4 44483629-e029-490a-bd89-0b5c6b2d7e38 Article (Published version) Public 2022_reco.pdf 333708 application/pdf CC BY-4.0 971afc2346c9a01a51978bd8bc05ed749e97478a55ec95546056f813fc35e16e openAccess Faculté de médecine / Section de médecine clinique / Département de pédiatrie, gynécologie et obstétrique

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Recognition, identification, and diagnosis announcement of neonatal arterial ischemic stroke: A combined exploratory quantitative and qualitative study on parents' lived experiences	Archives de pédiatrie			2021	84	119

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Leal Martins, Cindy