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1.
JAMA Netw Open ; 6(5): e2313503, 2023 05 01.
Article in English | MEDLINE | ID: mdl-37184834

ABSTRACT

Importance: Robust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed. Objective: To prioritize quality measures among parents who lost a child to cancer. Design, Setting, and Participants: This survey study was conducted using an electronic, cross-sectional discrete choice experiment (DCE) with maximum difference scaling from January to June 2021 in the US. In each of 21 questions in the DCE, participants were presented with a set of 4 quality measures and were asked to select the most and least important measures within each set. All 28 quality measures were presented an equal number of times in different permutations. In the volunteer sample, 69 eligible bereaved parents enrolled in the study; 61 parents completed the DCE (participation rate, 88.4%). Main Outcomes and Measures: Using choices participants made, a hierarchical bayesian multinomial logistic regression was fit to derive mean importance scores with 95% credible intervals (95% Crs) for each quality measure, representing the overall probability of a quality measure being selected as most important. Importance scores were rescaled proportionally from 0 to 100, with the sum of scores for all quality measures adding up to 100. This enabled interpretation of scores as the relative importance of quality measures. Results: Participants included 61 bereaved parents (median [range] age, 48 [24-74] years; 55 individuals self-identified as women [90.2%]; 1 American Indian or Alaska Native [1.6%], 1 Asian [1.6%], 2 Black or African American [3.3%], 1 Native Hawaiian or Pacific Islander, and 58 White [91.8%]; 58 not Hispanic or Latinx [95.1%]). Highest-priority quality measures by mean importance score included having a child's symptoms treated well (9.25 [95% Cr, 9.06-9.45]), feeling that a child's needs were heard by the health care team (8.39 [95% Cr, 8.05-8.73]), and having a goal-concordant end-of-life experience (7.45 [95% Cr, 6.84-8.05]). Lowest-priority quality measures included avoiding chemotherapy (0.33 [95% Cr, 0.21-0.45]), provision of psychosocial support for parents (1.01 [95% Cr, 0.57-1.45]), and avoiding the intensive care unit (1.09 [95% Cr, 0.74-1.43]). Rank-ordering measures by mean importance revealed that symptom management was 9 times more important to parents than psychosocial support for themselves. Conclusions and Relevance: This study found that bereaved parents prioritized end-of-life quality measures focused on symptom management and goal-concordant care while characterizing quality measures assessing their own psychosocial support and their child's hospital resource use as substantially less important. These findings suggest that future research should explore innovative strategies to measure care attributes that matter most to families of children with advanced cancer.


Subject(s)
Neoplasms , Terminal Care , Child , Humans , Female , Middle Aged , Cross-Sectional Studies , Bayes Theorem , Parents/psychology , Terminal Care/psychology , Death , Neoplasms/therapy , Neoplasms/psychology
2.
Sleep Med ; 104: 64-72, 2023 04.
Article in English | MEDLINE | ID: mdl-36898188

ABSTRACT

BACKGROUND: Variations in circadian regulating mechanisms generate different individual preferences in respect of sleep and activity timing, which are known as chronotypes. In this sense, specifically during adolescence, there is a greater tendency for an eveningness chronotype. One factor that has been shown to have an impact on circadian rhythm patterns, as well as on some aspects of cognitive function, is the relatively common Val66Met (rs6265) polymorphism in the human brain-derived neurotrophic factor gene. OBJECTIVE: This study aimed to evaluate the effect of the BDNF Val66Met polymorphism on the performance of adolescents in attentional tests, circadian preferences and activity-rest rhythm. METHODS: 85 healthy high school students completed the Morningness-Eveningness Questionnaire to assess their circadian preferences; were evaluated using the Psychological Battery for Attention Assessment; and were categorized as carriers and non-carriers of the rs6265 polymorphism using the TaqMan rt-PCR technique. A subsample of 42 students had their activity/rest rhythm recorded by actigraphy for nine days from which sleep parameters were estimated. RESULTS: Circadian preference did not affect attentional performance (p > 0.1), but the time that the students attended school had an impact on all types of attention with morning shift students scoring higher, regardless of chronotype (p < 0.05). The presence of the BDNF Val66Met polymorphism was associated only with alternate attention performance (p < 0.05). Regarding actigraphy evaluation, the carriers of the polymorphism demonstrated significantly higher total time in bed, total sleep time, social jetlag, and earlier sleep onset. CONCLUSIONS: The results indicate some degree of adaptation in the students' attentional performance, according to their school schedules. The presence of BDNF polymorphism demonstrated a counterintuitive impact on attentional performance, comparing to previous findings. The findings reinforce the effect of genetic traits on sleep-wake rhythm parameters, when objectively evaluated.


Subject(s)
Brain-Derived Neurotrophic Factor , Circadian Rhythm , Humans , Adolescent , Brain-Derived Neurotrophic Factor/genetics , Circadian Rhythm/genetics , Sleep/genetics , Rest , Surveys and Questionnaires
3.
Pediatrics ; 149(Suppl 5)2022 05 01.
Article in English | MEDLINE | ID: mdl-35503321

ABSTRACT

BACKGROUND AND OBJECTIVES: Our objective is to identify common family functioning measurement tools and assess their compatibility with family-health development and life-course perspectives. METHODS: Data sources include PubMed, ERIC, CINAHL, Families and Societies Worldwide, PsychInfo, Web of Science, PsychNet, and Health and Psychosocial Instruments. Title and abstract screening and full-text review of articles were conducted by multiple reviewers based on prespecified inclusion criteria. Data extraction focused on features of identified measurements tools, including: (1) name (2) domains of family functioning measured, (3) established psychometric properties, and (4) original context of psychometric evaluation (eg, details about the study sample). RESULTS: Of the 50 measurement tools identified, 94% measured organizational patterns (eg, flexibility, connectedness, or resources), 46% measured belief systems (eg, making meaning of adversity, or positive outlook), and 54% measured communication processes (eg, open emotional sharing, or collaborative problem-solving). CONCLUSIONS: Existing measures of family functioning can aid life-course researchers in understanding family processes as contexts for health and well-being. There also remain opportunities to refine or develop measures of family functioning more compatible with a life-course perspective that assess family processes (1) at various life stages; (2) with various backgrounds, identities, structures, and experiences; and (3) embedded in or impacted by various contexts that may facilitate or hinder family functioning.


Subject(s)
Family Health , Life Change Events , Communication , Humans , Psychometrics
4.
Public Health Nutr ; 23(17): 3226-3235, 2020 12.
Article in English | MEDLINE | ID: mdl-32886057

ABSTRACT

OBJECTIVE: Mobile produce markets (MPM) offering Supplemental Nutrition Assistance Program (SNAP) incentive programmes have the potential to provide accessible and affordable fruits and vegetables (FV) to populations at risk of food insecurity. The objective of this study is to characterise the customer base of an MPM and describe their participation at twelve market sites serving low-income seniors. DESIGN: In 2018, customers from an MPM in Rhode Island (RI) participated in a cross-sectional survey (n 330; 68 % response rate), which measured dietary patterns, food security and food shopping behaviours. We compared the shopping habits and market experiences of customers who currently received SNAP benefits with those who did not currently receive SNAP benefits. SETTING: An MPM in RI which offers a 50 % discount for FV purchased with SNAP benefits. PARTICIPANTS: This study describes current market customers at twelve market sites serving low-income seniors. RESULTS: Market customers were mostly low-income, female, over the age of 50 years and Hispanic/Latino. Most customers received SNAP benefits, and almost half were food insecure. In addition, three quarters of SNAP customers reported their SNAP benefits last longer since shopping at the markets. Mixed logistic regression models indicated that SNAP customers were more likely to report buying and eating more FV than non-SNAP customers. CONCLUSIONS: MPM are critical resources of affordable produce and have been successful in improving access to FV among individuals of low socio-economic status in RI. This case study can inform policy and programme recommendations for MPM and SNAP incentive programmes.


Subject(s)
Food Assistance , Fruit , Vegetables , Costs and Cost Analysis , Cross-Sectional Studies , Female , Food Supply , Humans , Male , Middle Aged , Rhode Island
5.
PLoS One ; 9(5): e96281, 2014.
Article in English | MEDLINE | ID: mdl-24798220

ABSTRACT

BACKGROUND: Novel developmental functions have been attributed to the P2X7 receptor (P2X7R) including proliferation stimulation and neural differentiation. Mouse embryonic stem cells (ESC), induced with retinoic acid to neural differentiation, closely assemble processes occurring during neuroectodermal development of the early embryo. PRINCIPAL FINDINGS: P2X7R expression together with the pluripotency marker Oct-4 was highest in undifferentiated ESC. In undifferentiated cells, the P2X7R agonist Bz-ATP accelerated cell cycle entry, which was blocked by the specific P2X7R inhibitor KN-62. ESC induced to neural differentiation with retinoic acid, reduced Oct-4 and P2X7R expression. P2X7R receptor-promoted intracellular calcium fluxes were obtained at lower Bz-ATP ligand concentrations in undifferentiated and in neural-differentiated cells compared to other studies. The presence of KN-62 led to increased number of cells expressing SSEA-1, Dcx and ß3-tubulin, as well as the number of SSEA-1 and ß3-tubulin-double-positive cells confirming that onset of neuroectodermal differentiation and neuronal fate determination depends on suppression of P2X7R activity. Moreover, an increase in the number of Ki-67 positive cells in conditions of P2X7R inhibition indicates rescue of progenitors into the cell cycle, augmenting the number of neuroblasts and consequently neurogenesis. CONCLUSIONS: In embryonic cells, P2X7R expression and activity is upregulated, maintaining proliferation, while upon induction to neural differentiation P2X7 receptor expression and activity needs to be suppressed.


Subject(s)
Cell Differentiation , Cell Proliferation , Embryonic Stem Cells/metabolism , Receptors, Purinergic P2X7/physiology , Animals , Calcium/metabolism , Doublecortin Protein , Embryonic Stem Cells/cytology , Gene Knockout Techniques , Mice , Neurons/cytology , Neurons/metabolism , Octamer Transcription Factor-3/metabolism , Receptors, Purinergic P2X7/genetics , Receptors, Purinergic P2X7/metabolism , Up-Regulation
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