RESUMO
Objectives: We report the results of a pilot young patient survey that targeted patients with JSLE and JDM, exploring well-being, resilience and general concern about the coronavirus disease 2019 (COVID-19) pandemic as well as self-assessment of disease activity. Methods: The survey was completed anonymously by patients who had been approached via the automatically generated hospital database between June and December 2020. In addition to disease characteristics, geographic location, education and employment level, we explored young patients' resilience, mood and feelings, mental well-being, self-assessed disease activity and general COVID-19 concerns using validated tools and visual analogue scales. Results: This pilot study found that self-perceived disease activity was the strongest predictor of COVID-19 concern, irrespective of gender, employment and education status or well-being and resilience. Generalized concerns regarding the COVID-19 pandemic were significantly higher in females, although their self-reported DASs were comparable to male respondents. Conclusion: Our findings highlight a gender bias in the generalized concern related to the COVID-19 pandemic, irrespective of the examined potential confounders. This suggests the need for further research around young patient self-reported outcomes outside hospital visits, especially in the context of gender differences and potential challenges of future pandemics.
RESUMO
Greater understanding of the rate of oxygen delivery and uptake in sick preterm and term infants undergoing intensive care is an important aim of brain-orientated neonatal medicine. Near infrared spectroscopy (NIRS) is a continuous, non-invasive and portable technique which can be used to measure cerebral blood flow (CBF) in infants. It is also possible to use spatially resolved spectroscopy to measure absolute mean cerebral oxygen saturation (SmcO2). The aim of this study was to investigate the derivation of cerebral metabolic rate for oxygen (CMRO2) from these two measurements. Nine preterm infants were studied, of median (range) gestational age 25 (23-37) weeks. A NIRO300 was used to measure CBF and SmcO2 simultaneously over the right and left hemisphere. Median (range) left and right cerebral hemisphere values for CMRO2 were 0.95 (0.79-1.53) ml 100g(-1) x min(-1) and 0.88 (0.69-1.46) ml 100g(-1) x min(-1), respectively. No significant difference was seen between the left- and right-sided values. These values are similar to median (range) values previously reported in infants using positron emission tomography or more invasive NIRS methods. Further work is necessary to define limits on the use of this technique, particularly in the assumption of the venous:arterial compartment volume ratio across different infants.