ABSTRACT
Background: The pathophysiology of vertically acquired hepatitis B (HBV) and hepatitis C virus (HCV) in a pediatric population is well described, however less is known about the psychosocial impact of a child diagnosis and/or living with viral hepatitis. This qualitative study aimed to explore family's experience of living with viral hepatitis to inform supportive models of pediatric centred health care. Method(s): Eligible children, adolescents and their parent/s attending an outpatient pediatric specialist liver clinic in a tertiary hospital in New South Wales, Australia were invited to attend an in-depth interview. Interviews were undertaken face to face in February 2020-March 2020 and April 2021-June 2021 due to COVID-19 related restrictions. Written consent was obtained from participants and their parents. Basic demographic and participant treatment information were collected using a closed-response face sheet containing 11 questions. In-depth interviews were audio-recorded, transcribed verbatim and checked. Broad theme categories were examined across all participant narratives. Data were thematically analyzed using Braun and Clarke's framework. Result(s): Children recruited were a mean age of 11.2 years (SD 4.9), born in Australia and had vertically acquired HBV or HCV. Four children reported being multilingual and spoke a combination of languages at home. Most children were aware of anti-viral therapies however, at the time of the study no child had commenced. Participant narratives identified four dominant themes three being: Diagnosis, Parent-child disclosure and Secrecy at home. The fourth theme, Living with hepatitis unfolded two distinct subthemes in the way that participants and their parents navigated life. HCV positive children and adolescents had experienced discrimination within and outside the nuclear family, were less informed and their parents expressed concern about treatment and maternal guilt. In contrast, living with HBV was approached with certainty, normality and an expected transition to a parent's adult liver clinic. Conclusion(s): Findings from this study highlight a range of complex psychosocial challenges that children, adolescents and families endure. Additional educational and psychosocial interventions to best support families, particularly those diagnosed with HCV are recommended. The long-term impact and/or emotional burden of these challenges on a child's wellbeing are poorly understood warranting further investigation.
ABSTRACT
BACKGROUND: The neurologic assessment in neuro-oncology (NANO) scale was developed as a standardized metric to objectively measure neurologic function in patients with brain tumors and complement radiographic assessment in defining overall outcome. The scale has been incorporated in clinical trials. Early data is suggestive of feasibility and that NANO contributes to overall outcome assessment. However, real-world use of the NANO scale to drive clinical-decision making and the predictive value of the NANO scale to determine overall survival remains unclear in IDH-wt GBM. METHODS: We report on an ongoing study using the NANO scale to evaluate neurologic function in patients with IDH-wt GBM, seen at Dana-Farber Cancer Institute (DFCI). Patient demographics, tumor histology and molecular status, treatment history and progression dates are being captured. NANO score, as collected by a built-in scale in our institutional electronic medical record (EMR), functional status (Karnofsky performance status) and corticosteroid dose are collected at prespecified time points (prior to start of therapy, and during each subsequent MRI visit). Changes in the NANO score will be correlated to overall survival. Statistical analyses including descriptive data analysis and generalized linear models will be performed using R (version 3.4.3). RESULTS: Since June 2020, 50 patients have been enrolled in this study, including 42 (84%) with ≥2 follow up visits. Study accrual was initially impacted by the COVID-19 pandemic, but adaptation to a virtual platform for NANO allowed for improved recruitment and follow up of patients. Study results will be available for discussion at the 2021 SNO conference. CONCLUSIONS: Evaluation of neurologic function by NANO is feasible in a virtual framework in a prospective study in patients with GBM, aided by integration of the scale in our institutional EMR. NANO is able to objectively track neurologic function throughout disease course in IDH-wt GBM.
ABSTRACT
Sensory perception alterations are common in relation to COVID-19 disease, but less is known about the characteristic of the sensory alterations, and how they associate with alterations in appetite and eating behaviour. The current study aims to investigate the acute and long-term effects of COVID-19 disease on (1) the desire for food, hunger, and satiety sensations;(2) smell, taste, and flavour perception;(3) meals and intake of food types;and (4) the frequency of commonly applied strategies to tackle potential changes in appetite and sensory perception. An online survey was conducted among Danish adults (n = 102) who had experienced changes in appetite, sensory perception, and/or food-related pleasure due to COVID-19 disease. Key results include appetite-altering effects at all times during the day when suffering from COVID-19 and often associated with impaired sensory function. Severe sensory perception alterations were found, namely, for the perception of taste, ageusia > hypogeusia > hypergeusia, and for the perception of smell, anosmia > parosmia > hyposmia > hyperosmia. Eating behavioural changes included alteration in quantitative and qualitative aspects of intake. The effects were, in general, more pronounced during the acute phase of disease than during the post-acute phase. The findings illustrate the complexity by which COVID-19 affects human appetite, sensory perception, and eating behaviour, but also point to strategies to cope with these changes.