Purpose: To examine heterogeneity of quality-of-care ratings within families and to examine possible predictors of concordance.
Materials And Methods: We examined two aspects of agreement within families: response similarity and the amount of exact concordance in responses in a cohort of Danish ICU family members participating in a questionnaire survey (the European Quality Questionnaire: euroQ2).
Results: Two hundred seventy-four family respondents representing 122 patients were included in the study. Identical ratings between family members occurred in 28%-59% of families, depending upon the specific survey item. In a smaller sample of 28 families whose patients died, between 39% and 86% gave identical responses to items rating end-of-life care. There was more response variance within than between families, yielding low estimates of intrafamily correlation. Statistics correcting for chance agreement also suggested modest within-family agreement.
Conclusions: The finding that variance is higher within than between families suggests the value of including multiple participants within a family in order to capture varying points of view.
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http://dx.doi.org/10.1016/j.jcrc.2019.10.011 | DOI Listing |
J Eat Disord
January 2025
Bodywhys - The Eating Disorders Association of Ireland, 105, Blackrock, Co. Dublin, Ireland.
Background: Current research on the transmission of trauma and eating disorders across generations is limited. However, quantitative studies suggest that the influence of parents' and grandparents' eating disorders and their prior exposure to trauma are associated with the development of eating disorders in future generations. Qualitative research exploring personal accounts of the impact of transgenerational trauma on the development of eating disorders has been largely unexplored.
View Article and Find Full Text PDFInt J Equity Health
January 2025
Department of Pediatric Surgery, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246, Hamburg, Germany.
Background: Predicting burn-related mortality is vital for family counseling, triage, and resource allocation. Several of the burn-specific mortality prediction scores have been developed, including the Abbreviated Burn Severity Index (ABSI) in 1982. However, these scores are not tested for accuracy to support contemporary estimates of the global burden of burn injury.
View Article and Find Full Text PDFAlzheimers Res Ther
January 2025
Laboratory for Clinical Neuroscience, Center for Biomedical Technology, Universidad Politécnica de Madrid, IdISSC, Crta M40, km38, Madrid, 28223, Spain.
Background: Dementia patients commonly present multiple neuropathologies, worsening cognitive function, yet structural neuroimaging signatures of dementia have not been positioned in the context of combined pathology. In this study, we implemented an MRI voxel-based approach to explore combined and independent effects of dementia pathologies on grey and white matter structural changes.
Methods: In 91 amnestic dementia patients with post-mortem brain donation, grey matter density and white matter hyperintensity (WMH) burdens were obtained from pre-mortem MRI and analyzed in relation to Alzheimer's, vascular, Lewy body, TDP-43, and hippocampal sclerosis (HS) pathologies.
Implement Sci Commun
January 2025
Department of Obstetrics and Gynecology, Division of Maternal and Fetal Medicine, University of North Carolina School of Medicine, Chapel Hill, NC, 27599, USA.
Background: Pregnancy related hypertension is a leading cause of preventable maternal morbidity and mortality in the US, with consistently higher rates affecting racial minorities. Many complications are preventable with timely treatment, in alignment with the Alliance for Innovation on Maternal Health's Patient Safety Bundle ("Bundle"). The Bundle has been implemented successfully in inpatient settings, but 30% of preeclampsia-related morbidity occurs in outpatient settings in North Carolina.
View Article and Find Full Text PDFOrphanet J Rare Dis
January 2025
Department of Social Work, Child Welfare and Social Policy, Faculty of Social Science, Oslo Metropolitan University, Oslo, Norway.
Introduction: The purpose of this study was to investigate perceptions and opinions on what constitutes determinants for quality of life (QoL) in individuals with syndromic Heritable Aortic Disease (sHTAD), utilizing a qualitative study approach. Further to discuss clinical implications and direction for research.
Method: A qualitative focus group interview study was conducted of 47 adults (Marfan syndrome (MFS) = 14, Loeys-Dietz syndrome (LDS) = 11, vascular Ehlers Danlos syndrome (EDS) = 11, relatives = 11).
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