Background
Despite medical benefits, hydroxyurea adherence in adolescents is often poor. As part of a baseline assessment of 28 youth (10–18 years) parent dyads who participated in a 6‐month ...feasibility trial to improve hydroxyurea adherence, we measured the relationship between greater barriers to adherence and health‐related quality of life (HRQL) from youth and parent perspectives.
Procedure
Barriers were measured using the Adolescent and Parent Medication Barriers Scales with nine hydroxyurea items added. Barriers reported by ≥25% of the sample were considered common. Generic and disease‐specific HRQL were measured by PedsQL and PedsQL Sickle Cell Disease modules. Data were analyzed using descriptive statistics, Cronbach alpha, Spearman correlation coefficients, and paired t tests.
Results
Fifty‐six subjects (28 dyads) participated. Youth reported greater barriers compared with parents (5.0 ± 3.9 and 3.5 ± 3.2; P = 0.03), with >80% of respondents reporting ≥1 barriers. Twelve barriers were reported by ≥25% of adolescents, whereas six were reported by ≥25% of parents. Of these, only two were common to both dyad members. Approximately one‐third of youth had generic and disease‐specific HRQL scores that fell at or below cutoff scores, suggesting being at risk for impaired HRQL. Greater barriers were inversely associated with poorer generic (parent r = −0.43, P = 0.03; youth r = −0.44, P < 0.001) and disease‐specific HRQL (parent r = −0.53, P = 0.005; youth r = −0.53, P < 0.001).
Conclusions
Hydroxyurea barriers were frequently reported but differed by dyad members’ perspective. Greater barriers were associated with poorer generic and disease‐specific HRQL. To reduce barriers to hydroxyurea in youth with sickle cell disease, perspectives of both dyad members should be addressed.
Hydroxyurea (HU) is the sole approved pharmacological therapy for sickle cell disease (SCD). Higher levels of fetal hemoglobin (HbF) diminish deoxygenated sickle globin polymerization in vitro and ...clinically reduce the incidence of disease morbidities. Clinical and laboratory effects of HU largely result from induction of HbF expression, though to a highly variable extent. Baseline and HU-induced HbF expression are both inherited complex traits. In children with SCD, baseline HbF remains the best predictor of drug-induced levels, but this accounts for only a portion of the induction. A limited number of validated genetic loci are strongly associated with higher baseline HbF levels in SCD. For induced HbF levels, genetic approaches using candidate single-nucleotide polymorphisms (SNPs) have identified some of these same loci as being also associated with induction. However, SNP associations with induced HbF are only partially independent of baseline levels. Additional approaches to understanding the impact of HU on HbF and its other therapeutic effects on SCD include pharmacokinetic, gene expression-based, and epigenetic analyses in patients and through studies in existing murine models for SCD. Understanding the genetic and other factors underlying the variability in therapeutic effects of HU for pediatric SCD is critical for prospectively predicting good responders and for designing other effective therapies.
Objective To assess the risks of moderate prematurity for cerebral palsy (CP), developmental delay/mental retardation (DD/MR), and seizure disorders in early childhood. Study design Retrospective ...cohort study using hospitalization and outpatient databases from the Northern California Kaiser Permanente Medical Care Program. Data covered 141 321 children ≥30 weeks born between Jan 1, 2000, and June 30, 2004, with follow-up through Jun 30, 2005. Presence of CP, DD/MR, and seizures was based on International Classification of Diseases , Ninth Revision codes identified in the encounter data. Separate Cox proportional hazard models were used for each of the outcomes, with crude and adjusted hazard ratios calculated for each gestational age group. Results Decreasing gestational age was associated with increased incidence of CP and DD/MR, even for those born at 34 to 36 weeks gestation. Children born late preterm were >3 times as likely (hazard ratio, 3.39; 95% CI, 2.54-4.52) as children born at term to be diagnosed with CP. A modest association with DD/MR was found for children born at 34 to 36 weeks (hazard ratio, 1.25; 95% CI, 1.01-1.54), but not for children in whom seizures were diagnosed. Conclusions Prematurity is associated with long-term neurodevelopmental consequences, with risks increasing as gestation decreases, even in infants born at 34 to 36 weeks.
Transnationalism means many things to many people, from crossing physical borders to crossing intellectual ones. The Limits of Transnationalism reassesses the overly optimistic narratives often ...associated with this malleable term, revealing both the metaphorical and very real obstacles for transnational mobility. Nancy L. Green begins her wide-ranging examination with the story of Frank Gueydan, an early twentieth-century American convicted of manufacturing fake wine in France who complained bitterly that he was neither able to get a fair trial there nor to enlist the help of US officials. Gueydan's predicament opens the door for a series of inquiries into the past twenty-five years of transnational scholarship, raising questions about the weaknesses of global networks and the slippery nature of citizenship ties for those who try to live transnational lives. The Limits of Transnationalism serves as a cogent reminder of this topic's complexity, calling for greater attention to be paid to the many bumps in the road.
To identify people living with sickle cell disease (SCD) and study their healthcare utilization, researchers can either use clinical records linked to administrative data or use billing diagnosis ...codes in stand‐alone administrative databases. Correct identification of individuals clinically managed for SCD using diagnosis codes in claims databases is limited by the accuracy of billing codes in outpatient encounters. In this critical review, we assess the strengths and limitations of claims‐based SCD case‐finding algorithms in stand‐alone administrative databases that contain both inpatient and outpatient records. Validation studies conducted using clinical records and newborn screening for confirmation of SCD case status have found that algorithms that require three or more nonpharmacy claims or one inpatient claim plus two or more outpatient claims with SCD codes show acceptable accuracy (positive predictive value and sensitivity) in children and adolescents. Future studies might seek to assess the accuracy of case‐finding algorithms over the lifespan.
Organizational networks shape education policy by influencing power holders and elites, but do they have similar effects on grassroots activists? We use data from the National Survey on Opting Out ...(2016 and 2018; n = 2,909) to examine the role of organizational networks in mobilizing activists in the opt-out movement (a movement in which parents and caregivers refuse to have their children sit for standardized tests). Despite characterizations of the opt-out movement as a bunch of “soccer moms” disappointed with their children’s test scores, our findings show that opt-out is in fact a structured movement reliant on social movement organizations (SMOs) with agendas that go beyond standardized tests. Further, we demonstrate a small but significant correlation between contact with SMOs and individual policy preferences. These patterns suggest that organizational networks may inform education policy by creating a social space for activists to learn about different policy ideas in education. We discuss implications for research and practice.
To examine the effect of a community health worker (CHW) intervention, augmented by tailored text messages, on adherence to hydroxyurea therapy in youths with sickle cell disease, as well as on ...generic and disease-specific health-related quality of life (HrQL) and youth-parent self-management responsibility concordance.
We conducted a 2-site randomized controlled feasibility study (Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment HABIT) with 2:1 intervention allocation. Youths and parents participated as dyads. Intervention dyads received CHW visits and text message reminders. Data were analyzed using descriptive statistics, the Wilcoxon signed-rank test, and growth models adjusting for group assignment, time, and multiple comparisons. Changes in outcomes from 0 to 6 months were compared with their respective minimal clinically important differences.
A total of 28 dyads (mean age of youths, 14.3 ± 2.6 years; 50% Hispanic) participated (18 in the intervention group, 10 in the control group), with 10.7% attrition. Accounting for group assignment, time, and multiple comparisons, at 6 months intervention youths reported improved generic HrQL total score (9.8 points; 95% CI, 0.4-19.2) and Emotions subscale score (15.0 points; 95% CI, 1.6-28.4); improved disease-specific subscale scores for Worry I (30.0 points; 95% CI, 8.5-51.5), Emotions (37.0 points, 95% CI, 9.4-64.5), and Communication I (17.8 points; 95% CI, 0.5-35.1); and 3-month dyad self-management responsibility concordance (3.5 points; 95% CI, −0.2 to 7.1). There were no differences in parent proxy-reported HrQL measures at 6 months.
These findings add to research examining effects of behavioral interventions on HrQL outcomes in youths with sickle cell disease.
ClinicalTrials.gov: NCT02029742.
The Trials of Transnationalism Green, Nancy L.
The Journal of modern history,
12/2017, Letnik:
89, Številka:
4
Journal Article
Recenzirano
Transnationalism has helped expand horizons beyond the nation-state and exceptionalist narratives, and it has even been enlisted by the European Union to describe its project of European integration. ...Transnationalism has spread among the social sciences and humanities and has been particularly fruitful in abetting the seek-and-find function of historians, in this case helping to discover earlier links, borrowings, and adaptations in order better to emphasize the porousness of state and identity boundaries. The interconnectedness and interactions of the past have been (re-)found. Here, Green discusses the use of transnationalism in migration studies.
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