Patient experience and challenges in group concept mapping for clinical research.

BACKGROUND AND OBJECTIVE: Group concept mapping (GCM) is a research method that engages stakeholders in generating, structuring and representing ideas around a specific topic or question. GCM has been used with patients to answer questions related to health and disease but little is known about the patient experience as a participant in the process. This paper explores the patient experience participating in GCM as assessed with direct observation and surveys of participants. METHODS: This is a secondary analysis performed within a larger study in which 3 GCM iterations were performed to engage patients in identifying patient-important outcomes for diabetes care. Researchers tracked the frequency and type of assistance required by each participant to complete the sorting and rating steps of GCM. In addition, a 17-question patient experience survey was administered over the telephone to the participants after they had completed the GCM process. Survey questions asked about the personal impact of participating in GCM and the ease of various steps of the GCM process. RESULTS: Researchers helped patients 92 times during the 3 GCM iterations, most commonly to address software and computer literacy issues, but also with the sorting phase itself. Of the 52 GCM participants, 40 completed the post-GCM survey. Respondents averaged 56 years of age, were 50% female and had an average hemoglobin A1c of 9.1%. Ninety-two percent (n = 37) of respondents felt that they had contributed something important to this research project and 90% (n = 36) agreed or strongly agreed that their efforts would help others with diabetes. Respondents reported that the brainstorming session was less difficult when compared with sorting and rating of statements. DISCUSSION: Our results suggest that patients find value in participating in GCM. Patients reported less comfort with the sorting step of GCM when compared with brainstorming, an observation that correlates with our observations from the GCM sessions. Researchers should consider using paper sorting methods and objective measures of sorting quality when using GCM in patient-engaged research to improve the patient experience and concept map quality

Contrasting cumulative risk and multiple individual risk models of the relationship between Adverse Childhood Experiences (ACEs) and adult health outcomes

BACKGROUND: A very large body of research documents relationships between self-reported Adverse Childhood Experiences (srACEs) and adult health outcomes. Despite multiple assessment tools that use the same or similar questions, there is a great deal of inconsistency in the operationalization of self-reported childhood adversity for use as a predictor variable. Alternative conceptual models are rarely used and very limited evidence directly contrasts conceptual models to each other. Also, while a cumulative numeric \u27ACE Score\u27 is normative, there are differences in the way it is calculated and used in statistical models. We investigated differences in model fit and performance between the cumulative ACE Score and a \u27multiple individual risk\u27 (MIR) model that enters individual ACE events together into prediction models. We also investigated differences that arise from the use of different strategies for coding and calculating the ACE Score. METHODS: We merged the 2011-2012 BRFSS data (N = 56,640) and analyzed 3 outcomes. We compared descriptive model fit metrics and used Vuong\u27s test for model selection to arrive at best fit models using the cumulative ACE Score (as both a continuous or categorical variable) and the MIR model, and then statistically compared the best fit models to each other. RESULTS: The multiple individual risk model was a better fit than the categorical ACE Score for the \u27lifetime history of depression\u27 outcome. For the outcomes of obesity and cardiac disease, the cumulative risk and multiple individual risks models were of comparable fit, but yield different and complementary inferences. CONCLUSIONS: Additional information-rich inferences about ACE-health relationships can be obtained from including a multiple individual risk modeling strategy. Results suggest that investigators working with large srACEs data sources could empirically derive the number of items, as well as the exposure coding strategy, that are a best fit for the outcome under study. A multiple individual risk model could also be considered in addition to the cumulative risk model, potentially in place of estimation of unadjusted ACE-outcome relationships

Plasma cholesterol levels and brain development in preterm newborns.

BackgroundTo assess whether postnatal plasma cholesterol levels are associated with microstructural and macrostructural regional brain development in preterm newborns.MethodsSixty preterm newborns (born 24-32 weeks gestational age) were assessed using MRI studies soon after birth and again at term-equivalent age. Blood samples were obtained within 7 days of each MRI scan to analyze for plasma cholesterol and lathosterol (a marker of endogenous cholesterol synthesis) levels. Outcomes were assessed at 3 years using the Bayley Scales of Infant Development, Third Edition.ResultsEarly plasma lathosterol levels were associated with increased axial and radial diffusivities and increased volume of the subcortical white matter. Early plasma cholesterol levels were associated with increased volume of the cerebellum. Early plasma lathosterol levels were associated with a 2-point decrease in motor scores at 3 years.ConclusionsHigher early endogenous cholesterol synthesis is associated with worse microstructural measures and larger volumes in the subcortical white matter that may signify regional edema and worse motor outcomes. Higher early cholesterol is associated with improved cerebellar volumes. Further work is needed to better understand how the balance of cholesterol supply and endogenous synthesis impacts preterm brain development, especially if these may be modifiable factors to improve outcomes

Impact of deficit irrigation on grapevine cv. ‘Touriga Nacional’ during three seasons in Douro region: an agronomical and metabolomics approach

The introduction of irrigation in vineyards of the Mediterranean basin is a matter of debate, in particular in those of the Douro Demarcated Region (DDR), due to the limited number of available studies. Here, we aimed to perform a robust analysis in three consecutive vintages (2018, 2019, and 2020) on the impact of deficit irrigation on the yield, berry quality traits, and metabolome of cv. ‘Touriga Nacional’. Results showed that in the peaks of extreme drought, irrigation at 30% crop evapotranspiration (ETc) (R30) was able to prevent a decay of up to 0.4 MPa of leaf predawn water potential (ΨPd), but irrigation at 70% ETc (R70) did not translate into additional protection against drought stress. Following three seasons of irrigation, the yield was significantly improved in vines irrigated at R30, whereas irrigation at R70 positively affected the yield only in the 2020 season. Berry quality traits at harvest were not significantly changed by irrigation, except for Total Soluble Solids (TSS) in 2018. A UPLC–MS-based targeted metabolomic analysis identified eight classes of compounds, amino acids, phenolic acids, stilbenoid DP1, stilbenoid DP2, flavonols, flavan-3-ols, di-OH- and tri-OH anthocyanins, and showed that anthocyanins and phenolic acids did not change significantly with irrigation. The present study showed that deficit irrigation partially mitigated the severe summer water deficit conditions in the DDR but did not significantly change key metabolites.This research was funded by the VISCA project (Vineyards’ Integrated Smart Climate Application), funded by European Union’s Horizon 2020 research and innovation programme under grant agreement no. 730253. The Région-Centre Val de Loire (France) supported this work under the grant agreement to Project VITI’ACTIF. The work was also supported by the “Contrato-Programa” UIDB/04050/2020 funded by Portuguese national funds through the FCT I.P. The work was also supported by FCT, CCDR-N (Norte Portugal Regional Coordination and Development Commission) and European Funds (FEDER/POCI/COMPETE2020) through the project AgriFoodXXI (NORTE01-0145-FEDER-000041) and the research projects BerryPlastid (PTDC/BIA-FBT/28165/2017 and POCI-01-0145-FEDER-028165), MitiVineDrought (PTDC/BIA-FBT/30341/2017 and POCI-01-0145- FEDER-030341), and GrapeInfectomics (PTDC/ASPHOR/28485/2017). A.T. was supported by a post-doctoral researcher contract/position within the project “BerryPlastid”. This work also benefited from the networking activities within the European COST Action CA 17111 INTEGRAPE, the CoLAB VINES & WINES, and the CoLAB 4FOOD—Collaborative Laboratory for Innovation in the Food Industry

I had no other choice but to catch it too : the roles of family history and experiences with diabetes in illness representations.

BACKGROUND: A family history of diabetes and family members\u27 experiences with diabetes may influence individuals\u27 beliefs and expectations about their own diabetes. No qualitative studies have explored the relationship between family history and experiences and individuals\u27 diabetes illness representations. METHODS: Secondary data analysis of 89 exploratory, semi-structured interviews with adults with type 1 or type 2 diabetes seeking care in an urban health system. Participants had a recent diabetes-related ED visit/hospitalization or hemoglobin A1c \u3e 7.5%. Interviews were conducted until thematic saturation was achieved. Demographic data were collected via self-report and electronic medical record review. Interviews were audio-recorded, transcribed, and coded using a conventional content analysis approach. References to family history and family members\u27 experiences with diabetes were analyzed using selected domains of Leventhal\u27s Common Sense Model of Self-Regulation. RESULTS: Participants cited both genetic and behavioral family history as a major cause of their diabetes. Stories of relatives\u27 diabetes complications and death figured prominently in their discussion of consequences; however, participants felt controllability over diabetes through diet, physical activity, and other self-care behaviors. CONCLUSIONS: Findings supported an important role of family diabetes history and experience in development of diabetes illness representations. Further research is needed to expand our understanding of the relationships between these perceptions, self-management behaviors, and outcomes. Family practice providers, diabetes educators and other team members should consider expanding assessment of current family structure and support to also include an exploration of family history with diabetes, including which family members had diabetes, their self-care behaviors, and their outcomes, and how this history fits into the patient\u27s illness representations

Biallelic UBE4A loss-of-function variants cause intellectual disability and global developmental delay

Purpose: To identify novel genes associated with intellectual disability (ID) in four unrelated families. Methods: Here, through exome sequencing and international collaboration, we report eight individuals from four unrelated families of diverse geographic origin with biallelic loss-of-function variants in UBE4A. Results: Eight evaluated individuals presented with syndromic intellectual disability and global developmental delay. Other clinical features included hypotonia, short stature, seizures, and behavior disorder. Characteristic features were appreciated in some individuals but not all; in some cases, features became more apparent with age. We demonstrated that UBE4A loss-of-function variants reduced RNA expression and protein levels in clinical samples. Mice generated to mimic patient-specific Ube4a loss-of-function variant exhibited muscular and neurological/behavioral abnormalities, some of which are suggestive of the clinical abnormalities seen in the affected individuals. Conclusion: These data indicate that biallelic loss-of-function variants in UBE4A cause a novel intellectual disability syndrome, suggesting that UBE4A enzyme activity is required for normal development and neurological function

Canopy management through crop forcing impacts grapevine cv. ‘Touriga Nacional’ performance, ripening and berry metabolomics profile

Climate changes are speeding up the maturation of grapes in numerous areas of the world, including in the Mediterranean basin, but warmer temperatures often uncouple technical and phenolic maturity, resulting in unbalanced wines. We tested the efficacy of crop forcing (CF) in delaying the maturation of cv. ‘Touriga Nacional’ vines of the Douro Region, and their impacts on plant performance, berry quality attributes and metabolome were also evaluated. In two consecutive seasons (2019 and 2020), CF was conducted 15 (CF1) and 30 (CF2) days after fruit set by hedging growing shoots to five nodes and removing summer laterals, leaves and clusters. Results showed that while CF2 delayed ripening up to 51 days till first autumn rainfall, which compromised optimal sugar ripeness, CF1 delayed the technical maturation by one month, but both treatments severely impacted the production, mainly CF1, which reduced grapevine yield up to 90 %. The effect of CF in protecting vines against drought stress was not evident, judging by the values of leaf pre-dawn water potential measured along both seasons. CF1 and CF2 resulted in berries with lower pH and higher titratable acidity than controls, while total phenolics content increased by up to 48 % in 2020. A UPLC–MS-based targeted metabolomic analysis showed that CF increased the relative abundance of key metabolites like flavan-3-ols (i.e., catechin gallate increased by up to 661 %), trihydroxylated anthocyanins (i.e., delphinidin-3-O-glucoside increased by up to 656 % after CF2) and stilbenes (resveratrol increased by up to 700 % after CF2) with potential positive impacts in wine quality

Antifungal Activity of Resveratrol Derivatives against Candida Species

trans-Resveratrol (1a) is a phytoalexin produced by plants in response to infections by pathogens. Its potential activity against clinically relevant opportunistic fungal pathogens has previously been poorly investigated. Evaluated herein are the candidacidal activities of oligomers (2a, 3–5) of 1a purified from Vitis vinifera grape canes and several analogues (1b–1j) of 1a obtained through semisynthesis using methylation and acetylation. Moreover, trans-ε-viniferin (2a), a dimer of 1a, was also subjected to methylation (2b) and acetylation (2c) under nonselective conditions. Neither the natural oligomers of 1a (2a, 3–5) nor the derivatives of 2a were active against Candida albicans SC5314. However, the dimethoxy resveratrol derivatives 1d and 1e exhibited antifungal activity against C. albicans with minimum inhibitory concentration (MIC) values of 29–37 μg/mL and against 11 other Candida species. Compound 1e inhibited the yeast-to-hyphae morphogenetic transition of C. albicans at 14 μg/mL