52 research outputs found
Patient and caregiver perspectives on blood pressure in children with chronic kidney disease
Background: More than 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure to inform patient-centered care. /
Methods: Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology—Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey and two consensus workshops. We analyzed responses from children with CKD (ages 8–21 years) and caregivers (of children ages 0–21 years) pertaining to blood pressure. /
Results: Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms and expected links with CKD), confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning the need for prophylactic intervention, frustrated by inconsistent messages and struggling with technical skills in measurement), enabling monitoring and maintaining health (gaging well-being and preventing vascular complications), debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless and limiting life activities) and burden of medications (overwhelmed by the quantity of tablets and distress from unexpected side effects). /
Conclusions: For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure and minimizing symptoms and treatment burden may improve outcomes in children with CKD
Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops
The Dark Energy Survey and operations: Years 4 and 5
The Dark Energy Survey (DES) is an operating optical survey aimed at understanding the accelerating expansion of the universe using four complementary methods: weak gravitational lensing, galaxy cluster counts, baryon acoustic oscillations, and Type Ia supernovae. To perform the 5000 sq-degree wide field and 30 sq-degree supernova surveys, the DES Collaboration built the Dark Energy Camera (DECam), a 3 square-degree, 570-Megapixel CCD camera that was installed at the prime focus of the Blanco 4-meter telescope at the Cerro Tololo Inter-American Observatory (CTIO). DES has completed its third observing season out of a nominal five. This paper describes DES “Year 4” (Y4) and “Year 5” (Y5), the survey strategy, an outline of the survey operations procedures, the efficiency of operations and the causes of lost observing time. It provides details about the quality of these two-season's data, a summary of the overall status, and plans for the final survey season
Common and rare variant association analyses in amyotrophic lateral sclerosis identify 15 risk loci with distinct genetic architectures and neuron-specific biology
Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease with a lifetime risk of one in 350 people and an unmet need for disease-modifying therapies. We conducted a cross-ancestry genome-wide association study (GWAS) including 29,612 patients with ALS and 122,656 controls, which identified 15 risk loci. When combined with 8,953 individuals with whole-genome sequencing (6,538 patients, 2,415 controls) and a large cortex-derived expression quantitative trait locus (eQTL) dataset (MetaBrain), analyses revealed locus-specific genetic architectures in which we prioritized genes either through rare variants, short tandem repeats or regulatory effects. ALS-associated risk loci were shared with multiple traits within the neurodegenerative spectrum but with distinct enrichment patterns across brain regions and cell types. Of the environmental and lifestyle risk factors obtained from the literature, Mendelian randomization analyses indicated a causal role for high cholesterol levels. The combination of all ALS-associated signals reveals a role for perturbations in vesicle-mediated transport and autophagy and provides evidence for cell-autonomous disease initiation in glutamatergic neurons
Angular Analysis of the B+ -> K*(+)mu(+) mu(-) Decay
We present an angular analysis of the
B
+
→
K
*
+
(
→
K
0
S
π
+
)
μ
+
μ
−
decay using
9
fb
−
1
of
p
p
collision data collected with the LHCb experiment. For the first time, the full set of
C
P
-averaged angular observables is measured in intervals of the dimuon invariant mass squared. Local deviations from standard model predictions are observed, similar to those in previous LHCb analyses of the isospin-partner
B
0
→
K
*
0
μ
+
μ
−
decay. The global tension is dependent on which effective couplings are considered and on the choice of theory nuisance parameters
Recommended from our members
Study of the and states in decays
The decays are studied using a data
set corresponding to an integrated luminosity of 9fb collected with the
LHCb detector in proton-proton collisions between 2011 and 2018. Precise
measurements of the ratios of branching fractions with the intermediate
, and states are reported. The decay
of with is observed for the first time with a significance of 5.1
standard deviations. The mass differences between the ,
and states are measured to be resulting in the
most precise determination of the mass. The width of the
state is found to be below 5.2MeV at 90\% confidence level. The
Breit-Wigner width of the state is measured to be which is inconsistent with zero by 5.5 standard deviations
Search for time-dependent violation in and decays
A search for time-dependent violation of the charge-parity symmetry in and decays is performed at the LHCb experiment using proton-proton collision data recorded from 2015 to 2018 at a centre-of-mass energy of 13 TeV, corresponding to an integrated luminosity of 6 fb. The meson is required to originate from a decay, such that its flavour at production is identified by the charge of the accompanying pion. The slope of the time-dependent asymmetry of the decay rates of and mesons into the final states under consideration is measured to be , , where the first uncertainties are statistical and the second are systematic. These results are compatible with the conservation of the charge-parity symmetry at the level of 2 standard deviations and improve the precision by nearly a factor of two
International Society for Peritoneal Dialysis Nurse Liaison Committee: perspectives in peritoneal dialysis
Twelve-month findings of the MOVE Frankston randomised controlled trial of interventions to increase recreation facility usage and physical activity among adults
Substantial cross-sectional evidence and limited longitudinal research indicates that the availability of recreational facilities (e.g., parks, fitness centres) is associated with physical activity participation. However, few intervention trials have investigated how recreational infrastructure can be used to reduce inactivity levels in communities. The MOVE Frankston study aimed to assess the impact of low intensity strategies to promote use of a multi-purpose leisure and aquatic centre in a socioeconomically diverse, metropolitan community. This randomised controlled trial of two years’ duration compared public awareness raising (control condition) with two interventions: mailed information about the centre and a free entry pass (I-O); and this minimal intervention supplemented by customer relations management support through telephone contact, mailed promotional materials and additional incentives (I+S). Participants (n = 1320) were inactive adults living in the City of Frankston, Melbourne Australia. There were 928 people (70.3%) followed up at 12 months (61.2% female, 52% ≥55 yrs). Compared with controls, attendance at the Centre once or more was higher in both the I-O (OR 1.79, 95% CI 1.28–2.50) and I+S groups (OR 1.46, 95% CI 1.03–2.07). The proportion of people using the centre weekly did not differ by group. The odds of being in contemplation or preparation to use the Centre were higher in both the I-O (OR 1.76, 95% CI 1.28–2.42) and I+S groups (OR 1.48, 95% CI 1.07–2.06). Total physical activity and related social and cognitive factors did not differ between the groups. The findings show that the low intensity promotional strategies prompted occasional attendance and increased readiness to use this recreational facility, a level of behaviour change unlikely to reduce non-communicable disease risk. It is recommended that more frequent customer relations contact, and involvement of healthcare providers, be tested as strategies to encourage inactive adults to take up physical activity opportunities at recreational facilities of this typ
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