Caregiver Perspectives on Barriers and Facilitators to Timely Well-Child Visits for Black Infants.

OBJECTIVES: Missed infant well-child visits (WCV) result in lost opportunities for critical preventive care. Black infants consistently receive less WCV care than other racial groups. We sought to understand barriers and facilitators to timely infant WCV for Black families in the context of COVID-19. METHODS: We conducted 21 semi-structured interviews with caregivers of Medicaid-insured Black children aged 15- to 24-months who attended six or fewer of eight recommended well-child visits within the first 15 months of life. Interviews focused on WCV value, barriers, and facilitators. After developing our initial coding structure through rapid qualitative analysis, we inductively derived the final codebook and themes through line-by-line content analysis. RESULTS: Caregivers attended a mean of 3.53 of eight infant visits. Structural (e.g., transportation) and psychological (e.g., maternal depression) barriers delayed Black infant WCV. Families most frequently valued monitoring development and addressing concerns. Caregivers perceived visits as less urgent when infants seemed healthy or more recently avoided visits due to fears around COVID-19. Long waits and feeling rushed/dismissed were linked to WCV delays; positive provider relationships encouraged WCV attendance. Most caregivers reported reluctance to vaccinate. Vaccine hesitancy contributed to delayed infant WCV. CONCLUSIONS: Caregivers described several factors that impacted WCV attendance for Black infants. Persistent structural and psychological barriers are compounded by perceptions that caregiver time is not respected and by notable vaccine hesitancy. To address these barriers, well-care can meet Black families in their communities, better address caregiver wellbeing, more efficiently use caregiver and provider time, and cultivate partnerships with Black caregivers.

Methicillin-resistant Staphylococcus aureus nasal colonization in children with cerebral palsy.

A retrospective cohort of children admitted to the pediatric intensive care unit (PICU) with cerebral palsy was matched 1:3 by age and admission year to determine odds of methicillin-resistant Staphylococcus aureus (MRSA) nasal colonization. Adjusted odds of MRSA nasal colonization at PICU admission were 2.6-fold higher among children with cerebral palsy.

Utility of the global CDR® plus NACC FTLD rating and development of scoring rules: Data from the ARTFL/LEFFTDS Consortium.

INTRODUCTION: We created global rating scoring rules for the CDR® plus NACC FTLD to detect and track early frontotemporal lobar degeneration (FTLD) and to conduct clinical trials in FTLD. METHODS: The CDR plus NACC FTLD rating was applied to 970 sporadic and familial participants from the baseline visit of Advancing Research and Treatment in Frontotemporal Lobar Degeneration (ARTFL)/Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS). Each of the eight domains of the CDR plus NACC FTLD was equally weighed in determining the global score. An interrater reliability study was completed for 40 participants. RESULTS: The CDR plus NACC FTLD showed very good interrater reliability. It was especially useful in detecting clinical features of mild non-fluent/agrammatic variant primary progressive aphasia participants. DISCUSSION: The global CDR plus NACC FTLD score could be an attractive outcome measure for clinical trials in symptomatic FTLD, and may be useful in natural history studies and clinical trials in FTLD spectrum disorders.

Assessment of executive function declines in presymptomatic and mildly symptomatic familial frontotemporal dementia: NIH-EXAMINER as a potential clinical trial endpoint.

INTRODUCTION: Identifying clinical measures that track disease in the earliest stages of frontotemporal lobar degeneration (FTLD) is important for clinical trials. Familial FTLD provides a unique paradigm to study early FTLD. Executive dysfunction is a clinically relevant hallmark of FTLD and may be a marker of disease progression. METHODS: Ninety-three mutation carriers with no symptoms or minimal/questionable symptoms (MAPT, n = 31; GRN, n = 28; C9orf72, n = 34; Clinical Dementia Rating scale plus NACC FTLD Module < 1) and 78 noncarriers enrolled through Advancing Research and Treatment in Frontotemporal Lobar Degeneration/Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects studies completed the Executive Abilities: Measures and Instruments for Neurobehavioral Evaluation and Research (NIH-EXAMINER) and the UDS neuropsychological battery. Linear mixed-effects models were used to identify group differences in cognition at baseline and longitudinally. We examined associations between cognition, clinical functioning, and magnetic resonance imaging volumes. RESULTS: NIH-EXAMINER scores detected baseline and differences in slopes between carriers and noncarriers, even in carriers with a baseline Clinical Dementia Rating scale plus NACC FTLD Module = 0. NIH-EXAMINER declines were associated with worsening clinical symptoms and brain volume loss. DISCUSSION: The NIH-EXAMINER is sensitive to cognitive changes in presymptomatic familial FTLD and is a promising surrogate endpoint.

Individualized atrophy scores predict dementia onset in familial frontotemporal lobar degeneration.

INTRODUCTION: Some models of therapy for neurodegenerative diseases envision starting treatment before symptoms develop. Demonstrating that such treatments are effective requires accurate knowledge of when symptoms would have started without treatment. Familial frontotemporal lobar degeneration offers a unique opportunity to develop predictors of symptom onset. METHODS: We created dementia risk scores in 268 familial frontotemporal lobar degeneration family members by entering covariate-adjusted standardized estimates of brain atrophy into a logistic regression to classify asymptomatic versus demented participants. The score's predictive value was tested in a separate group who were followed up longitudinally (stable vs. converted to dementia) using Cox proportional regressions with dementia risk score as the predictor. RESULTS: Cross-validated logistic regression achieved good separation of asymptomatic versus demented (accuracy = 90%, SE = 0.06). Atrophy scores predicted conversion from asymptomatic or mildly/questionably symptomatic to dementia (HR = 1.51, 95% CI: [1.16,1.98]). DISCUSSION: Individualized quantification of baseline brain atrophy is a promising predictor of progression in asymptomatic familial frontotemporal lobar degeneration mutation carriers.

Clinical and volumetric changes with increasing functional impairment in familial frontotemporal lobar degeneration.

INTRODUCTION: The Advancing Research and Treatment in Frontotemporal Lobar Degeneration and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects longitudinal studies were designed to describe the natural history of familial-frontotemporal lobar degeneration due to autosomal dominant mutations. METHODS: We examined cognitive performance, behavioral ratings, and brain volumes from the first time point in 320 MAPT, GRN, and C9orf72 family members, including 102 non-mutation carriers, 103 asymptomatic carriers, 43 mildly/questionably symptomatic carriers, and 72 carriers with dementia. RESULTS: Asymptomatic carriers showed similar scores on all clinical measures compared with noncarriers but reduced frontal and temporal volumes. Those with mild/questionable impairment showed decreased verbal recall, fluency, and Trail Making Test performance and impaired mood and self-monitoring. Dementia was associated with impairment in all measures. All MAPT carriers with dementia showed temporal atrophy, but otherwise, there was no single cognitive test or brain region that was abnormal in all subjects. DISCUSSION: Imaging changes appear to precede clinical changes in familial-frontotemporal lobar degeneration, but specific early clinical and imaging changes vary across individuals.

Nonlinear Z-score modeling for improved detection of cognitive abnormality.

INTRODUCTION: Conventional Z-scores are generated by subtracting the mean and dividing by the standard deviation. More recent methods linearly correct for age, sex, and education, so that these "adjusted" Z-scores better represent whether an individual's cognitive performance is abnormal. Extreme negative Z-scores for individuals relative to this normative distribution are considered indicative of cognitive deficiency. METHODS: In this article, we consider nonlinear shape constrained additive models accounting for age, sex, and education (correcting for nonlinearity). Additional shape constrained additive models account for varying standard deviation of the cognitive scores with age (correcting for heterogeneity of variance). RESULTS: Corrected Z-scores based on nonlinear shape constrained additive models provide improved adjustment for age, sex, and education, as indicated by higher adjusted-R2. DISCUSSION: Nonlinearly corrected Z-scores with respect to age, sex, and education with age-varying residual standard deviation allow for improved detection of non-normative extreme cognitive scores.

Hotel Room Suicide: Cuyahoga, Orange, Travis, and Wayne Counties.

OBJECTIVE: To compare the suicide rates of local residents registering in local hotels with the general suicide rate in that county and to compare the suicide rates of hotel guests from outside the county with the national suicide rate. METHODS: The numbers of cases of suicide in hotel rooms and the general community were tabulated for Cuyahoga County, Ohio, for calendar years 2010-2017; in Orange County, California, and Travis County, Texas, for 2010-2012; and in Wayne County, Michigan, for 1997 to March 2005. The percentage of local residents registering in local hotel rooms was estimated from various sources to stratify the suicide risk for travelers and local residents. RESULTS: The suicide rate of local residents registering in local hotels was elevated compared to the general nonhotel population in each county (range of relative risk, 15.1-37.8; P < .0001, Poisson distribution). Hotel guests from outside each county had a reduced rate of suicide compared to the national rate (range of relative risk, 0.124-0.524; P < .05, Poisson distribution). With regard to suicide method, drug overdoses accounted for a significantly greater percentage in hotel rooms than in the nonhotel population in 3 of 4 counties (range of risk ratios, 2.03-4.51, P < .01; test of proportions), with the opposite pattern for gunshot wounds (range of risk ratios, 0.27-0.50; P < .01, test of proportions). CONCLUSIONS: Although local residents register in hotels for various reasons, there appears to be a subpopulation with a purpose of avoiding rescue. Consistent with the risk-rescue rating, means of suicide with lower lethality, eg, drug overdoses, account for a greater percentage of cases in a setting with less chance of rescue. In contrast to the local use population, the sense of purpose or meaning inherent in travel could explain the decreased risk of suicide in guests from outside the county.