ObjectiveTo explore the lived experience of ‘brain fog’—the wide variety of neurocognitive symptoms that can follow COVID-19.Design and settingA UK-wide longitudinal qualitative study comprising online focus groups with email follow-up.Method50 participants were recruited from a previous qualitative study of the lived experience of long COVID-19 (n=23) and online support groups for people with persistent neurocognitive symptoms following COVID-19 (n=27). In remotely held focus groups, participants were invited to describe their neurocognitive symptoms and comment on others’ accounts. Individuals were followed up by email 4–6 months later. Data were audiotaped, transcribed, anonymised and coded in NVIVO. They were analysed by an interdisciplinary team with expertise in general practice, clinical neuroscience, the sociology of chronic illness and service delivery, and checked by people with lived experience of brain fog.ResultsOf the 50 participants, 42 were female and 32 white British. Most had never been hospitalised for COVID-19. Qualitative analysis revealed the following themes: mixed views on the appropriateness of the term ‘brain fog’; rich descriptions of the experience of neurocognitive symptoms (especially executive function, attention, memory and language), accounts of how the illness fluctuated—and progressed over time; the profound psychosocial impact of the condition on relationships, personal and professional identity; self-perceptions of guilt, shame and stigma; strategies used for self-management; challenges accessing and navigating the healthcare system; and participants’ search for physical mechanisms to explain their symptoms.ConclusionThese qualitative findings complement research into the epidemiology and mechanisms of neurocognitive symptoms after COVID-19. Services for such patients should include: an ongoing therapeutic relationship with a clinician who engages with their experience of neurocognitive symptoms in its personal, social and occupational context as well as specialist services that include provision for neurocognitive symptoms, are accessible, easily navigable, comprehensive and interdisciplinary.
Objective To explore the lived experience of brain fog i.e the wide variety of neurocognitive symptoms that can follow Covid-19. Design and setting UK wide longitudinal qualitative study comprising online interviews and focus groups with email follow-up. Method 50 participants were recruited from a previous qualitative study of the lived experience of long Covid (n = 23) and online support groups for people with persistent neurological problems following Covid-19 (n = 27). In remotely held focus groups, participants were invited to describe their cognitive symptoms and comment on others accounts. Individuals were followed up by email 4-6 months later. Data were audiotaped, transcribed, anonymised and coded in NVIVO. They were analysed by an interdisciplinary team with expertise in general practice, clinical neuroscience, the sociology of chronic illness and service delivery, and checked by three people with lived experience of brain fog. Results 84% of participants were female and 60% were White British ethnicity. Most had never been hospitalised for Covid-19. Qualitative analysis revealed the following themes: mixed views on the appropriateness of the term brain fog; rich descriptions of the experience of neurocognitive impairments (especially executive function, attention, memory and language), accounts of how the illness fluctuated, and in some but not all cases, resolved, over time; the profound psychosocial impact of the condition on relationships, personal and professional identity; self-perceptions of guilt, shame and stigma; strategies used for self-management; challenges accessing and navigating the healthcare system; and participants search for physical mechanisms to explain their symptoms. Conclusion These qualitative findings complement research into the epidemiology and underlying pathophysiological mechanisms for neurological symptoms after Covid-19. Services for such patients should include: an ongoing therapeutic relationship with a clinician who engages with the illness in its personal, social and occupational context as well as specialist services that are accessible, easily navigable, comprehensive, and interdisciplinary.
CONTEXT: Preterm brain injuries are common; neurodevelopmental outcomes following contemporary neonatal care are continually evolving. OBJECTIVE: To systematically review and meta-analyze neurodevelopmental outcomes among preterm infants after intraventricular hemorrhage (IVH) and white matter injury (WMI). DATA SOURCES: Published and gray literature were searched across 10 databases between 2000 and 2021. STUDY SELECTION: Observational studies reporting 3-year neurodevelopmental outcomes for preterm infants with IVH or WMI compared with preterm infants without injury. DATA EXTRACTION: Study characteristics, population characteristics, and outcome data were extracted. RESULTS: Thirty eight studies were included. There was an increased adjusted risk of moderate-severe neurodevelopmental impairment after IVH grade 1 to 2 (adjusted odds ratio 1.35 [95% confidence interval 1.05–1.75]) and IVH grade 3 to 4 (adjusted odds ratio 4.26 [3.25–5.59]). Children with IVH grade 1 to 2 had higher risks of cerebral palsy (odds ratio [OR] 1.76 [1.39–2.24]), cognitive (OR 1.79 [1.09–2.95]), hearing (OR 1.83 [1.03–3.24]), and visual impairment (OR 1.77 [1.08–2.9]). Children with IVH grade 3 to 4 had markedly higher risks of cerebral palsy (OR 4.98 [4.13–6.00]), motor (OR 2.7 [1.52–4.8]), cognitive (OR 2.3 [1.67–3.15]), hearing (OR 2.44 [1.42–4.2]), and visual impairment (OR 5.42 [2.77–10.58]). Children with WMI had much higher risks of cerebral palsy (OR 14.91 [7.3–30.46]), motor (OR 5.3 [3–9.36]), and cognitive impairment (OR 3.48 [2.18–5.53]). LIMITATIONS: Heterogeneity of outcome data. CONCLUSIONS: Mild IVH, severe IVH, and WMI are associated with adverse neurodevelopmental outcomes. Utilization of core outcome sets and availability of open-access study data would improve our understanding of the nuances of these outcomes.
BackgroundOver 3000 children suffer a perinatal brain injury in England every year according to national surveillance. The childhood outcomes of infants with perinatal brain injury are however unknown.MethodsA systematic review and meta-analyses were undertaken of studies published between 2000 and September 2021 exploring school-aged neurodevelopmental outcomes of children after perinatal brain injury compared with those without perinatal brain injury. The primary outcome was neurodevelopmental impairment, which included cognitive, motor, speech and language, behavioural, hearing or visual impairment after 5 years of age.ResultsThis review included 42 studies. Preterm infants with intraventricular haemorrhage (IVH) grades 3–4 were found to have a threefold greater risk of moderate-to-severe neurodevelopmental impairment at school age OR 3.69 (95% CI 1.7 to 7.98) compared with preterm infants without IVH. Infants with perinatal stroke had an increased incidence of hemiplegia 61% (95% CI 39.2% to 82.9%) and an increased risk of cognitive impairment (difference in full scale IQ −24.2 (95% CI –30.73 to –17.67) . Perinatal stroke was also associated with poorer academic performance; and lower mean receptive −20.88 (95% CI –36.66 to –5.11) and expressive language scores −20.25 (95% CI –34.36 to –6.13) on the Clinical Evaluation of Language Fundamentals (CELF) assessment. Studies reported an increased risk of persisting neurodevelopmental impairment at school age after neonatal meningitis. Cognitive impairment and special educational needs were highlighted after moderate-to-severe hypoxic-ischaemic encephalopathy. However, there were limited comparative studies providing school-aged outcome data across neurodevelopmental domains and few provided adjusted data. Findings were further limited by the heterogeneity of studies.ConclusionsLongitudinal population studies exploring childhood outcomes after perinatal brain injury are urgently needed to better enable clinicians to prepare affected families, and to facilitate targeted developmental support to help affected children reach their full potential.
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