RESUMEN
CONTEXT: Racial disparities in health outcomes have historically impacted Black and Native American children with serious illness, yet little is known about how racism shapes the healthcare experiences of these families. To improve care experiences for this population, we must understand the myriad of ways that racism may impact their experiences with serious illness. OBJECTIVES: (1) To assess the extent to which the experiences of Black and Native American families have been captured in existing serious illness and palliative care literature and (2) explore how experiences of racism uniquely impact this population. METHODS: We conducted a scoping review and qualitative meta-synthesis of peer-reviewed articles from 1980-2022 that included Black and/or Native American parents' or caregivers' experiences of serious illness care. We abstracted study characteristics, and forms of racism mentioned. RESULTS: Searches yielded 2762 articles, of which 6 were reviewed based on inclusion criteria. Three key themes emerged from the literature on the experiences of Black families navigating pediatric serious illness that highlight how parents navigate their future after a serious illness diagnosis; how relationships and support networks change after diagnosis; and the challenges associated with navigating grief and suffering after a diagnosis. Institutionalized racism and interpersonal racism were the most identified forms of racism experienced by Black families. None of the articles identified included Native American families. CONCLUSION: Our findings highlight the pressing need for further qualitative research to explore the lived experiences of racially minoritized families-especially studies focusing on the experiences of Native American families.
RESUMEN
Accumulation and degradation of scar tissue in fibrotic liver disease occur slowly, typically over many years. Direct measurement of fibrogenesis, the rate of scar tissue deposition, may provide valuable therapeutic and prognostic information. We describe here results from a pilot study utilizing in vivo metabolic labeling to measure the turnover rate of hepatic collagen and collagen-associated proteins in plasma for the first time in human subjects. Eight subjects with chronic liver disease were labeled with daily oral doses of 2H2O for up to 8 weeks prior to diagnostic liver biopsy and plasma collection. Tandem mass spectrometry was used to measure the abundance and fractional synthesis rate (FSR) of proteins in liver and blood. Relative protein abundance and FSR data in liver revealed marked differences among subjects. FSRs of hepatic type I and III collagen ranged from 0.2-0.6% per day (half-lives of 4 months to a year) and correlated significantly with worsening histologic fibrosis. Analysis of plasma protein turnover revealed two collagen-associated proteins, lumican and transforming growth factor beta-induced-protein (TGFBI), exhibiting FSRs that correlated significantly with FSRs of hepatic collagen. In summary, this is the first direct measurement of liver collagen turnover in vivo in humans and suggests a high rate of collagen remodeling in advanced fibrosis. In addition, the FSRs of collagen-associated proteins in plasma are measurable and may provide a novel strategy for monitoring hepatic fibrogenesis rates.