Normative scores for the NIH Toolbox dynamic visual acuity test from 3 to 85 years

As part of the National Institutes of HealthToolbox initiative, a computerized test of dynamic visual acuity (cDVA) was developed and validated as an easy-to-administer, cost- and timeefficient test of vestibular and visual function. To establish normative reference values, 3,992 individuals, aged 3–85 years, without vestibular pathology underwent cDVA testing at multiple clinical research testing facilities across the United States. Test scores were stratified by sociodemographic characteristics. cDVA was worse in males (p \u3c0.001) and those subjects 50 years or older, while there was no difference in dynamic visual acuity across age groups binned from 3 to 49 years. Furthermore, we used these normative cDVA data as a criterion reference to compare both the long (validated) and short versions of the test. Both versions can distinguish between those with and without vestibular pathology (p D0.0002 long; p D0.0025 short). The intraclass correlation coefficient between longand short-cDVA tests was 0.86

Normative scores for the NIH Toolbox dynamic visual acuity test from 3 to 85 years

As part of the National Institutes of HealthToolbox initiative, a computerized test of dynamic visual acuity (cDVA) was developed and validated as an easy-to-administer, cost- and timeefficient test of vestibular and visual function. To establish normative reference values, 3,992 individuals, aged 3–85 years, without vestibular pathology underwent cDVA testing at multiple clinical research testing facilities across the United States. Test scores were stratified by sociodemographic characteristics. cDVA was worse in males (p \u3c0.001) and those subjects 50 years or older, while there was no difference in dynamic visual acuity across age groups binned from 3 to 49 years. Furthermore, we used these normative cDVA data as a criterion reference to compare both the long (validated) and short versions of the test. Both versions can distinguish between those with and without vestibular pathology (p D0.0002 long; p D0.0025 short). The intraclass correlation coefficient between longand short-cDVA tests was 0.86

Development and Validation of a Socioeconomic Kidney Transplant Derailers Index

Background: Socioeconomic barriers can prevent successful kidney transplant (KT) but are difficult to measure efficiently in clinical settings. We created and validated an individual-level, single score Kidney Transplant Derailers Index (KTDI) and assessed its association with waitlisting and living donor KT (LDKT) rates. Methods: The dataset included 733 patients presenting for KT evaluation in a transplant center in California. Exploratory factor analysis was used to identify socioeconomic barriers to KT (derailers) to include in the index. Potential KT derailers included health insurance, employment, financial insecurity, educational attainment, perception of neighborhood safety, access to a vehicle, having a washer/dryer, and quality of social support. Validity was tested with associations between KTDI scores and the following: (1) the Area Deprivation Index (ADI) and (2) time to KT waitlisting and LDKT. Results: Nine derailers were retained, omitting only social support level from the original set. The KTDI was scored by summing the number of derailers endorsed (mean: 3.0; range: 0–9). Black patients had higher estimated KTDI scores than other patient groups (versus White patients, 3.8 versus 2.1; P \u3c 0.001, effect size = 0.81). In addition, the KTDI was associated with the ADI (γ = 0.70, SE = 0.07; P \u3c 0.001). Finally, in comparison to the lower tertile, patients in the upper and middle KTDI tertiles had lower hazard of waitlisting (upper tertile hazard ratio [HR]: 0.34, 95% confidence interval [CI]: 0.25-0.45; middle tertile HR: 0.54, 95% CI: 0.40-0.72) and receiving an LDKT (upper tertile HR: 0.15, 95% CI: 0.08-0.30; middle tertile HR: 0.35, 95% CI: 0.20-0.62). These associations remained significant when adjusting for the ADI and other patient characteristics. Conclusions: The KTDI is a valid indicator of socioeconomic barriers to KT for individual patients that can be used to identify patients at risk for not receiving a KT

Donor milk intake and infant growth in a South African neonatal unit: a cohort study

Background Implications of donor milk feedings on infant growth in resource limited settings remain uncertain. This knowledge gap includes the impact of donor milk availability on infant intake of mother’s own milk. Therefore, this investigation aimed to measure intake and growth in infants receiving donor milk when born to women from resource limited backgrounds with high rates of human immunodeficiency virus (HIV). Methods A retrospective cohort study enrolled eligible infants admitted to a South African combined neonatal intensive and secondary high care unit, within a one year admission period during 2015, with signed consent for donor milk feedings. A certified milk bank provided donor milk. Daily nutritional intake during the first month was recorded. Details included proportional intake of donor milk, mother’s own milk and infant formula. The primary outcome of infant growth velocity from day back to birth weight to discharge was calculated when length of stay was ≥14 days. Analyses primarily used T-tests; mixed effects models compared weekly calorie intake. Results One hundred five infants with donor milk consent were born at 30.9 ± 3.6 weeks of gestation, weighing 1389 ± 708 g. Forty percent of mothers had HIV. Infant growth velocity did not differ based on percent of feedings as donor milk (≥ 50%: 11.8 ± 4.9 g/kg/d; < 50%: 13.5 ± 5.3 g/kg/d; p = 0.3). Percent of feedings from donor milk was similar based on maternal HIV status (positive: 31 ± 25%; negative: 36 ± 29%; p = 0.4), as was percent of feedings as mother’s milk (positive: 53 ± 35%; negative: 58 ± 30%; p = 0.4). Calorie intake increased markedly during the first two weeks and then plateaued (p < 0.0001). Conclusions Donor milk feedings in higher proportions did not further impair growth of infants managed in a South African combined neonatal intensive and secondary high care unit with growth rates already below reference ranges. The provision of donor milk contributed to feedings being composed of primarily human milk during the first month. Increasing early calorie intake may improve infant growth in this center

The PROMIS satisfaction with social participation measures demonstrated responsiveness in diverse clinical populations

To conduct a longitudinal evaluation of PROMIS® Social Function measures (Satisfaction with Participation in Social Roles, and Satisfaction with Participation in Discretionary Social Activities) in English-speaking people with chronic health conditions

The Association Between Parent Engagement and Child Outcomes in Social Skills Training Programs: Discovering the Secret Agent Society in Partnership

Previous research in clinical, community, and school settings has demonstrated positive outcomes for the Secret Agent Society (SAS) social skills training program. This is designed to help children on the autism spectrum become more aware of emotions in themselves and others and to ‘problem-solve’ complex social scenarios. Parents play a key role in the implementation of the SAS program, attending information and support sessions with other parents and providing supervision, rewards, and feedback as their children complete weekly ‘home mission’ assignments. Drawing on data from a school-based evaluation of the SAS program, this study examined whether parents’ engagement with these elements of the intervention was linked to the quality of their children’s participation and performance. Sixty-eight 8-14 year olds (mean age 10.7) with a diagnosis of autism participated in the program. The findings indicated that ratings of parental engagement were positively correlated with children’s competence in completing home missions and with the quality of their contribution during group teaching sessions. However, there was a less consistent relationship between parental engagement and measures of children’s social and emotional skill gains over the course of the program

Identifying Motor, Emotional-Behavioral, and Cognitive Deficits that Comprise the Triad of HD Symptoms from Patient, Caregiver, and Provider Perspectives

Background: The objective of this study was to identify important attributes associated with the triad of symptoms (cognition, emotional–behavioral, and motor) of Huntington's disease (HD) from patient, caregiver, and medical provider perspectives to facilitate development of a new disease‐specific, health‐related quality of life (HRQOL) instrument. Methods: We conducted a targeted literature review of HD and HRQOL instruments, expert surveys, and patient and caregiver phone‐based interviews to extract information on the symptoms and issues most relevant to the HD symptom triad (HD triad). The data collected from these sources were used to generate themes and subdomains and to develop an integrated schema that highlights the key dimensions of the triad. Results: The search identified the following areas: emotional functioning/behavioral changes (e.g., positive emotions, sadness/depression); cognitive functioning (e.g., memory/learning, attention/comprehension); physical functioning (e.g., motor functioning, medication); social functioning (e.g., leisure, interpersonal relationships); end‐of‐life concerns/planning; and gene testing. Fifteen individuals diagnosed with HD and 16 HD caregivers, recruited from several Huntington's Disease Society of America support group networks, completed phone interviews. Nineteen US medical providers who specialize in HD completed the online survey. Twenty‐six subdomains of the HD symptom triad (seven cognition, 12 emotional–behavioral, and seven motor) emerged relatively consistently across patient, caregiver, and provider samples. These included movements/chorea, memory impairment, depression, and anxiety. Discussion: Based on an integrated, mixed‐methods approach, important HD triad symptom were identified and organized into a guiding schema. These patient‐, caregiver‐, and provider‐triangulated data served as the basis for development of a HD‐specific HRQOL instrument, the HD‐PRO‐TRIAD™

Implementation, Evalution and Maintenance of a Social-Emotional Skills Training Program for Children with an Autism Spectrum Disorder in a Specialist School Setting

Socialization difficulties in children with an Autism Spectrum Disorder (ASD) are often associated with peer rejection and impaired academic achievement. Schools might appear to offer an ideal setting for social-emotional skills (SES) instruction. However, common challenges to successful implementation of school-based programs include inadequate staffing and resourcing, and a lack of ASD-specific staff training. This paper describes how barriers to program implementation were overcome in a project evaluating the Secret Agent Society (SAS) SES training intervention within Autism Spectrum Australia (Aspect) specialist classes. Questionnaire data was collected from school staff over a one-year period. Findings supported the effectiveness of the adoption process used, and suggest that SAS was feasible and acceptable to school staff

Proapoptotic BH3-only proteins trigger membrane integration of prosurvival Bcl-w and neutralize its activity

Prosurvival Bcl-2–like proteins, like Bcl-w, are thought to function on organelles such as the mitochondrion and to be targeted to them by their hydrophobic COOH-terminal domain. We unexpectedly found, however, that the membrane association of Bcl-w was enhanced during apoptosis. In healthy cells, Bcl-w was loosely attached to the mitochondrial membrane, but it was converted into an integral membrane protein by cytotoxic signals that induce binding of BH3-only proteins, such as Bim, or by the addition of BH3 peptides to lysates. As the structure of Bcl-w has revealed that its COOH-terminal domain occupies the hydrophobic groove where BH3 ligands bind, displacement of that domain by a BH3 ligand would displace the hydrophobic COOH-terminal residues, allowing their insertion into the membrane. To determine whether BH3 ligation is sufficient to induce the enhanced membrane affinity, or to render Bcl-w proapoptotic, we mimicked their complex by tethering the Bim BH3 domain to the NH2 terminus of Bcl-w. The chimera indeed bound avidly to membranes, in a fashion requiring the COOH-terminal domain, but neither promoted nor inhibited apoptosis. These results suggest that ligation of a proapoptotic BH3-only protein alters the conformation of Bcl-w, enhances membrane association, and neutralizes its survival function

PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions

To present an overview of a series of studies in which the clinical validity of the National Institutes of Health’s Patient Reported Outcome Measurement Information System (NIH; PROMIS) measures was evaluated, by domain, across six clinical populations