Measurement properties of the Inclusion Body Myositis Functional Rating Scale.

OBJECTIVES: To evaluate the validity, reliability, responsiveness and meaningful change threshold of the Inclusion Body Myositis (IBM) Functional Rating Scale (FRS). METHODS: Data from a large 20-month multicentre, randomised, double-blind, placebo-controlled trial in IBM were used. Convergent validity was tested using Spearman correlation with other health outcomes. Discriminant (known groups) validity was assessed using standardised effect sizes (SES). Internal consistency was tested using Cronbach's alpha. Intrarater reliability in stable patients and equivalence of face-to-face and telephone administration were tested using intraclass correlation coefficients (ICCs) and Bland-Altman plots. Responsiveness was assessed using standardised response mean (SRM). A receiver operator characteristic (ROC) curve anchor-based approach was used to determine clinically meaningful IBMFRS change. RESULTS: Among the 150 patients, mean (SD) IBMFRS total score was 27.4 (4.6). Convergent validity was supported by medium to large correlations (rs modulus: 0.42-0.79) and discriminant validity by moderate to large group differences (SES=0.51-1.59). Internal consistency was adequate (overall Cronbach's alpha: 0.79). Test-retest reliability (ICCs=0.84-0.87) and reliability of telephone versus face-to-face administration (ICCs=0.93-0.95) were excellent, with Bland-Altman plots showing good agreement. Responsiveness in the worsened group defined by various external constructs was large at both 12 (SRM=-0.76 to -1.49) and 20 months (SRM=-1.12 to -1.57). In ROC curve analysis, a drop in at least two IBMFRS total score points was shown to represent a meaningful decline. CONCLUSIONS: When administered by trained raters, the IBMFRS is a reliable, valid and responsive tool that can be used to evaluate the impact of IBM and its treatment on physical function, with a 2-point reduction representing meaningful decline. TRIAL REGISTRATION NUMBER: NCT02753530.

Molecular evolutionary analyses of tooth genes support sequential loss of enamel and teeth in baleen whales (Mysticeti).

The loss of teeth and evolution of baleen racks in Mysticeti was a profound transformation that permitted baleen whales to radiate and diversify into a previously underutilized ecological niche of bulk filter-feeding on zooplankton and other small prey. Ancestral state reconstructions suggest that postnatal teeth were lost in the common ancestor of crown Mysticeti. Genomic studies provide some support for this hypothesis and suggest that the genetic toolkit for enamel production was inactivated in the common ancestor of living baleen whales. However, molecular studies to date have not provided direct evidence for the complete loss of teeth, including their dentin component, on the stem mysticete branch. Given these results, several questions remain unanswered: (1) Were teeth lost in a single step or did enamel loss precede dentin loss? (2) Was enamel lost early or late on the stem mysticete branch? (3) If enamel and dentin/tooth loss were decoupled in the ancestry of baleen whales, did dentin loss occur on the stem mysticete branch or independently in different crown mysticete lineages? To address these outstanding questions, we compiled and analyzed complete protein-coding sequences for nine tooth-related genes from cetaceans with available genome data. Seven of these genes are associated with enamel formation (ACP4, AMBN, AMELX, AMTN, ENAM, KLK4, MMP20) whereas two other genes are either dentin-specific (DSPP) or tooth-specific (ODAPH) but not enamel-specific. Molecular evolutionary analyses indicate that all seven enamel-specific genes have inactivating mutations that are scattered across branches of the mysticete tree. Three of the enamel genes (ACP4, KLK4, MMP20) have inactivating mutations that are shared by all mysticetes. The two genes that are dentin-specific (DSPP) or tooth-specific (ODAPH) do not have any inactivating mutations that are shared by all mysticetes, but there are shared mutations in Balaenidae as well as in Plicogulae (Neobalaenidae + Balaenopteroidea). These shared mutations suggest that teeth were lost at most two times. Shared inactivating mutations and dN/dS analyses, in combination with cetacean divergence times, were used to estimate inactivation times of genes and by proxy enamel and tooth phenotypes at ancestral nodes. The results of these analyses are most compatible with a two-step model for the loss of teeth in the ancestry of living baleen whales: enamel was lost very early on the stem Mysticeti branch followed by the independent loss of dentin (and teeth) in the common ancestors of Balaenidae and Plicogulae, respectively. These results imply that some stem mysticetes, and even early crown mysticetes, may have had vestigial teeth comprised of dentin with no enamel. Our results also demonstrate that all odontocete species (in our study) with absent or degenerative enamel have inactivating mutations in one or more of their enamel genes.

Comparing rural traffic safety in Canada and Australia: a scoping review of the literature.

INTRODUCTION: The reduction of road fatalities is a priority established by the WHO and ratified by the UN. Rates of road fatalities are disproportionately high in rural areas in both Australia and Canada, two Commonwealth countries with comparable healthcare systems and rural health challenges. The purpose of this review was to compare and contrast the epidemiology, risk factors and prevention strategies of rural road fatalities in both countries to inform the next steps for prevention. METHODS: A scoping literature review was undertaken systematically to search for peer-reviewed literature published from January 2000 to June 2021. Articles were reviewed from five databases (EMCARE, Medline, CINAHL, Scopus and Informit). Search terms were adapted to suit each database and included combinations of keywords such as 'traffic accident', 'fatality', 'rural/remote', 'Australia' and 'Canada'. Themes and data associated with the research outcomes were extracted and tabulated. RESULTS: Forty-three papers were identified as relevant: 14 exploring epidemiology, 25 investigating risk factors and 37 proposing prevention strategies. People living in rural locations were 3.2 (95% confidence interval: 3.0-3.5) times more likely than urban dwellers to die in road-related incidents, with rates of motor vehicle fatalities universally higher. Common risk factors included drugs and alcohol, speed, driver error and biological sex. Key prevention strategies included improved infrastructure, vehicle design, impaired driving prevention and education. CONCLUSION: Further research regarding preventative measures and significant investment in rural road safety in both Australia and Canada are needed to prevent future incidents.

Understanding symptomatic experience, impact, and emotional response in recently diagnosed metastatic castration-resistant prostate cancer: a qualitative study.

PURPOSE: We sought to explore the symptomatic experience of men recently told their castration-resistant prostate cancer has metastasized (mCRPC); the impact and emotional response to this; the emotional burden of monitoring development to metastatic status; and the emotional impact on the primary support person (PSP). METHODS: Interviews were conducted with 25 men recently diagnosed with mCRPC from the United States (US), France, and Germany. We also interviewed 14 PSPs. Thematic analysis was conducted using Atlas.ti. RESULTS: The mean age of patients was 72.2 years; mean time since metastasis 7.8 months. The most frequent symptoms were fatigue/tiredness, sexual dysfunction, and pain. Metastasis had a negative emotional impact on the patient and PSP. Some explicitly associated certain symptoms/impacts with metastasis, such as localized pain, diarrhea, blood in stool, and increased impact on activities of daily living. About 72% of patients highlighted the emotional impact of a metastatic diagnosis, reporting worry/anxiety/fear, low mood/depression, shock, increased burden on PSP, and strain on relationships. Monitoring prostate-specific antigen (PSA) values was important; ten patients explicitly discussed feeling fear/worry when PSA was rising, and glad/happy/excited when PSA was falling. Most reported that, if a medication had been available to them to delay metastasis, they would have taken it, even if they were asymptomatic. CONCLUSIONS: Interviews highlighted the substantial burden of mCRPC to both patient and PSP. Development of metastasis was associated with symptoms worsening rather than the development of new symptoms, with physical and emotional impacts. Most patients were willing to take a medication to delay metastasis.

Saliva microRNA Biomarkers of Cumulative Concussion.

Recurrent concussions increase risk for persistent post-concussion symptoms, and may lead to chronic neurocognitive deficits. Little is known about the molecular pathways that contribute to persistent concussion symptoms. We hypothesized that salivary measurement of microribonucleic acids (miRNAs), a class of epitranscriptional molecules implicated in concussion pathophysiology, would provide insights about the molecular cascade resulting from recurrent concussions. This hypothesis was tested in a case-control study involving 13 former professional football athletes with a history of recurrent concussion, and 18 age/sex-matched peers. Molecules of interest were further validated in a cross-sectional study of 310 younger individuals with a history of no concussion (n = 230), a single concussion (n = 56), or recurrent concussions (n = 24). There was no difference in neurocognitive performance between the former professional athletes and their peers, or among younger individuals with varying concussion exposures. However, younger individuals without prior concussion outperformed peers with prior concussion on three balance assessments. Twenty salivary miRNAs differed (adj. p < 0.05) between former professional athletes and their peers. Two of these (miR-28-3p and miR-339-3p) demonstrated relationships (p < 0.05) with the number of prior concussions reported by younger individuals. miR-28-3p and miR-339-5p may play a role in the pathophysiologic mechanism involved in cumulative concussion effects.

Odontogenic ameloblast-associated (ODAM) is inactivated in toothless/enamelless placental mammals and toothed whales.

BACKGROUND: The gene for odontogenic ameloblast-associated (ODAM) is a member of the secretory calcium-binding phosphoprotein gene family. ODAM is primarily expressed in dental tissues including the enamel organ and the junctional epithelium, and may also have pleiotropic functions that are unrelated to teeth. Here, we leverage the power of natural selection to test competing hypotheses that ODAM is tooth-specific versus pleiotropic. Specifically, we compiled and screened complete protein-coding sequences, plus sequences for flanking intronic regions, for ODAM in 165 placental mammals to determine if this gene contains inactivating mutations in lineages that either lack teeth (baleen whales, pangolins, anteaters) or lack enamel on their teeth (aardvarks, sloths, armadillos), as would be expected if the only essential functions of ODAM are related to tooth development and the adhesion of the gingival junctional epithelium to the enamel tooth surface. RESULTS: We discovered inactivating mutations in all species of placental mammals that either lack teeth or lack enamel on their teeth. A surprising result is that ODAM is also inactivated in a few additional lineages including all toothed whales that were examined. We hypothesize that ODAM inactivation is related to the simplified outer enamel surface of toothed whales. An alternate hypothesis is that ODAM inactivation in toothed whales may be related to altered antimicrobial functions of the junctional epithelium in aquatic habitats. Selection analyses on ODAM sequences revealed that the composite dN/dS value for pseudogenic branches is close to 1.0 as expected for a neutrally evolving pseudogene. DN/dS values on transitional branches were used to estimate ODAM inactivation times. In the case of pangolins, ODAM was inactivated ~ 65 million years ago, which is older than the oldest pangolin fossil (Eomanis, 47 Ma) and suggests an even more ancient loss or simplification of teeth in this lineage. CONCLUSION: Our results validate the hypothesis that the only essential functions of ODAM that are maintained by natural selection are related to tooth development and/or the maintenance of a healthy junctional epithelium that attaches to the enamel surface of teeth.

Multiple routes to mind wandering: Predicting mind wandering with resource theories.

Three experiments examine individual (attentional capacity) and task-related characteristics leading to mind wandering, and the effect of mind wandering on task performance. Drawing on resource theories, we tested interactive nonlinear effects of these predictors, manipulating task demand using math tests of varying difficulty (Exp 1: N = 143, three levels between-subjects; Exp 2: N = 59, three levels within-subjects; Exp 3: N = 133, four levels within-subjects). Results confirmed that mind wandering was most frequent during extreme task demand levels, although the effect varied somewhat between experiments. Additionally, results from Experiment 3 and an integrated analysis demonstrated that people with relatively higher attentional capacity were less likely to mind wander as task demand increased. Moreover, mind wandering was more detrimental to performance as task demand increased across all experiments. Our findings build on past research by demonstrating the importance of accounting for interactions and nonlinear effects of task demand and attentional capacity in mind wandering research.

An evaluation of large group cognitive behaviour therapy with mindfulness (CBTm) classes.

BACKGROUND: Ensuring equitable and timely access to Cognitive Behaviour Therapy (CBT) is challenging within Canada's service delivery model. The current study aims to determine acceptability and effectiveness of 4-session, large, Cognitive Behaviour Therapy with Mindfulness (CBTm) classes. METHODS: A retrospective chart review of adult outpatients (n = 523) who attended CBTm classes from 2015 to 2016. Classes were administered in a tertiary mental health clinic in Winnipeg, Canada and averaged 24 clients per session. Primary outcomes were (a) acceptability of the classes and retention rates and (b) changes in anxiety and depressive symptoms using Generalized Anxiety Disorder 7-item (GAD-7) and Patient Health Questionnaire 9-item (PHQ-9) scales. RESULTS: Clients found classes useful and > 90% expressed a desire to attend future sessions. The dropout rate was 37.5%. A mixed-effects linear regression demonstrated classes improved anxiety symptoms (GAD-7 score change per class = - 0.52 [95%CI, - 0.74 to - 0.30], P < 0.001) and depressive symptoms (PHQ-9 score change per class = - 0.65 [95%CI, - 0.89 to - 0.40], P < 0.001). Secondary analysis found reduction in scores between baseline and follow-up to be 2.40 and 1.98 for the GAD-7 and PHQ-9, respectively. Effect sizes were small for all analyses. CONCLUSIONS: This study offers preliminary evidence suggesting CBTm classes are an acceptable strategy to facilitate access and to engage and maintain clients' interest in pursuing CBT. Clients attending CBTm classes experienced improvements in anxiety and depressive symptoms. Symptom improvement was not clinically significant. Study limitations, such as a lack of control group, should be addressed in future research.

Correction to: The prevalence of underweight, overweight, obesity and associated risk factors among school-going adolescents in seven African countries.

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The relationship between physical fitness and occupational injury in emergency responders: A systematic review.

BACKGROUND: Emergency responders have jobs with physical demands that put them at risk of musculoskeletal injuries. OBJECTIVES: This paper systematically reviews existing literature examining the relationship between fitness and occupational injury in this group. METHODS: Comprehensive electronic searches were conducted using key words relating to musculoskeletal injury, fitness, and emergency responders. RESULTS: Eleven articles included in the review provided limited evidence for the relationship between physical fitness test scores and injury risk. There appears to be a correlation between better aerobic fitness and decreased risk of injury. CONCLUSIONS: Evidence of the relationship between aspects of physical fitness and occupational injury in emergency responders is extremely limited. More research is required to expand the knowledge in this area and to draw more definitive conclusions.

A review of muscle- and performance-based assessment instruments in DM1.

INTRODUCTION: Many outcome assessments used in myotonic dystrophy type 1 (DM1) were developed in other populations. Therefore, reliability and validity of these must be established in DM1 populations. METHODS: A structured literature review was conducted to identify muscle strength and performance-based functional outcome assessments used in DM1 and to review the DM1-specific reliability and validity evidence for those outcome assessments. RESULTS: Eighteen articles met inclusion criteria and were included in the review. The quantitative muscle testing technique and manual muscle testing were the key assessments of muscle strength. Reliability and validity evidence was also noted for several functional assessments of upper extremity (e.g., Purdue Pegboard Test) and lower extremity function (6-Minute Walk Test). CONCLUSIONS: This review identified a few measures with encouraging reliability and validity for use in a DM1 populations but highlighted the need for more research. Muscle Nerve 56: 78-85, 2017.

Review of patient-reported outcome measures for use in myotonic dystrophy type 1 patients.

INTRODUCTION: The heterogeneity of symptoms experienced by myotonic dystrophy type 1 (DM1) patients means patient-reported outcome (PRO) assessments are uniquely suited to address this through questionnaires. METHODS: A structured literature review of PRO measures used in DM1 populations, comparing psychometric data from this population was undertaken. RESULTS: One health status measure, 3 activities of daily living (ADL) scales, 3 health-related quality of life (HRQOL) assessments, and 5 sleep and fatigue measures have validity and reliability information from DM1 populations. The Myotonic Dystrophy Health Index and DM1 Activity and Participation Scale (DM1-Activ) have the strongest validity and reliability evidence. The DM1-Activc has been published recently and builds on the DM1-Activ by adding more relevant items. CONCLUSIONS: The PRO instruments we identified have varying psychometric evidence in DM1 populations; all require further testing to be confident of their ability to make accurate and valid measurements of symptoms, HRQOL, and ADL in a DM1 population. Muscle Nerve 56: 86-92, 2017.

Predicting suicide with the SAD PERSONS scale.

BACKGROUND: Suicide is a major public health issue, and a priority requirement is accurately identifying high-risk individuals. The SAD PERSONS suicide risk assessment scale is widely implemented in clinical settings despite limited supporting evidence. This article aims to determine the ability of the SAD PERSONS scale (SPS) to predict future suicide in the emergency department. METHODS: Five thousand four hundred sixty-two consecutive adults were seen by psychiatry consultation teams in two tertiary emergency departments with linkage to population-based administrative data to determine suicide deaths within 6 months, 1, and 5 years. RESULTS: Seventy-seven (1.4%) individuals died by suicide during the study period. When predicting suicide at 12 months, medium- and high-risk scores on SPS had a sensitivity of 49% and a specificity of 60%; the positive and negative predictive values were 0.9 and 99%, respectively. Half of the suicides at both 6- and 12-month intervals were classified as low risk by SPS at index visit. The area under the curve at 12 months for the Modified SPS was 0.59 (95% confidence interval [CI] range 0.51-0.67). High-risk scores (compared to low risk) were significantly associated with death by suicide over the 5-year study period using the SPS (hazard ratio 2.49; 95% CI 1.34-4.61) and modified version (hazard ratio 2.29; 95% CI 1.24-2.29). CONCLUSIONS: Although widely used in educational and clinical settings, these findings do not support the use of the SPS and Modified SPS to predict suicide in adults seen by psychiatric services in the emergency department.

A Multimodal Intervention for Children with ADHD Reduces Inequity in Health and Education Outcomes.

OBJECTIVE: To evaluate whether a multimodal intervention for children with attention-deficit hyperactivity disorder (ADHD) resulted in better long-term health and education outcomes and reduced inequity across the socioeconomic gradient. METHOD: We analyzed administrative data held in the Manitoba Population Research Data Repository describing recipients of a combined pharmacological/behavioural intervention for ADHD. The study cohort included children aged 5 to 17 years who visited the Manitoba Adolescent Treatment Centre's ADHD intervention service at least 3 times (2007-2012). Controls were matched on age, sex, year of ADHD diagnosis, and income quintile. We compared rates of hospital and emergency department visits, medication use and adherence, contact with child welfare services, and whether children were in their age-appropriate grade. We used concentration curves to estimate differences in outcomes between children from high- and low-income families. RESULTS: Children who received the intervention ( n = 485) had higher rates of medication use (rate ratio [RR], 1.21; 95% CI, 1.08 to 1.36) and adherence (RR, 1.42; 95% CI, 1.03 to 1.96) and were more likely to be in their age-appropriate grade (RR, 1.33; 95% CI, 1.09 to 1.63) compared with controls ( n = 1884). The intervention was also associated with reduced inequity in these outcomes across income deciles. There was no difference in the rates of hospital or emergency department visits or contacts with child welfare services. CONCLUSIONS: A multimodal ADHD intervention was associated with increased medication use and adherence and higher academic achievement. It was also related to lower inequity across the socioeconomic gradient. These results suggest that multimodal approaches may provide more equitable health and education outcomes for children with ADHD.

Method of invitation and geographical proximity as predictors of NHS Health Check uptake.

BACKGROUND: Uptake of NHS Health Checks remains below the national target. Better understanding of predictors of uptake can inform targeting and delivery. We explored invitation method and geographical proximity as predictors of uptake in deprived urban communities. METHODS: This observational cohort study used data from all 4855 individuals invited for an NHS Health Check (September 2010-February 2014) at five general practices in Stoke-on-Trent, UK. Attendance/non-attendance was the binary outcome variable. Predictor variables included the method of invitation, general practice, demographics, deprivation and distance to Health Check location. RESULTS: Mean attendance (61.6%) was above the city and national average, but varied by practice (47.5-83.3%; P < 0.001). Telephone/verbal invitations were associated with higher uptake than postal invitations (OR = 2.87, 95% CI = 2.26-3.64), yet significant practice-level variation remained. Distance to Health Check was not associated with attendance. Increasing age (OR = 1.04, 95% CI = 1.03-1.04), female gender (OR = 1.48, 95% CI = 1.30-1.68) and living in the least deprived areas (OR = 1.59, 95% CI = 1.23-2.05) were all independent positive predictors of attendance. CONCLUSIONS: Using verbal or telephone invitations should be considered to improve Health Check uptake. Other differences in recruitment and delivery that might explain remaining practice-level variation in uptake warrant further exploration. Geographical proximity may not be an important predictor of uptake in urban populations.

The prevalence of underweight, overweight, obesity and associated risk factors among school-going adolescents in seven African countries.

BACKGROUND: The burden caused by the coexistence of obesity and underweight in Low and Middle Income Countries is a challenge to public health. While prevalence of underweight among youth has been well documented in these countries, overweight, obesity and their associated risk factors are not well understood unlike in high income countries. METHODS: Cross-sectional data from the Global School-based Student Health Survey (GSHS) conducted in seven African countries were used for this study. The survey used a clustered design to obtain a representative sample (n = 23496) from randomly selected schools. 53.6% of the sample was male, and participants ranged in age from 11-17 years old. Body Mass Index (BMI) was calculated using age and sex adjusted self-reported heights and weights. Classification of weight status was based on the 2007 World Health Organization growth charts (BMI-for-age and sex). Multivariable Logistic Regression reporting Odds Ratios was used to assess potential risk factors on BMI, adjusting for age, sex, and country. Statistical analyses were performed with Stata with an alpha of 0.05 and reporting 95% confidence intervals. RESULTS: Unadjusted rates of being underweight varied from 12.6% (Egypt) to 31.9% (Djibouti), while being overweight ranged from 8.7% (Ghana) to 31.4% (Egypt). Obesity rates ranged from 0.6% (Benin) to 9.3% (Egypt). Females had a higher overweight prevalence for every age group in five of the countries, exceptions being Egypt and Malawi. Overall, being overweight was more prevalent among younger (≤12) adolescents and decreased with age. Males had a higher prevalence of being underweight than females for every country. There was a tendency for the prevalence of being underweight to increase starting in the early teens and decrease between ages 15 and 16. Most of the potential risk factors captured by the GSHS were not significantly associated with weight status. CONCLUSIONS: The prevalence of both overweight and underweight was relatively high, demonstrating the existence of the double burden of malnutrition among adolescents in developing countries. Several factors were not associated with weight status suggesting the need to explore other potential risk factors for overweight and underweight, including genetic factors and socioeconomic status.

Molecular Evidence for Relaxed Selection on the Enamel Genes of Toothed Whales (Odontoceti) with Degenerative Enamel Phenotypes.

Different species of toothed whales (Odontoceti) exhibit a variety of tooth forms and enamel types. Some odontocetes have highly prismatic enamel with Hunter-Schreger bands, whereas enamel is vestigial or entirely lacking in other species. Different tooth forms and enamel types are associated with alternate feeding strategies that range from biting and grasping prey with teeth in most oceanic and river dolphins to the suction feeding of softer prey items without the use of teeth in many beaked whales. At the molecular level, previous studies have documented inactivating mutations in the enamel-specific genes of some odontocete species that lack complex enamel. At a broader scale, however, it is unclear whether enamel complexity across the full diversity of extant Odontoceti correlates with the relative strength of purifying selection on enamel-specific genes. Here, we employ sequence alignments for seven enamel-specific genes (ACP4, AMBN, AMELX, AMTN, ENAM, KLK4, MMP20) in 62 odontocete species that are representative of all extant families. The sequences for 33 odontocete species were obtained from databases, and sequences for the remaining 29 species were newly generated for this study. We screened these alignments for inactivating mutations (e.g., frameshift indels) and provide a comprehensive catalog of these mutations in species with one or more inactivated enamel genes. Inactivating mutations are rare in Delphinidae (oceanic dolphins) and Platanistidae/Inioidea (river dolphins) that have higher enamel complexity scores. By contrast, mutations are much more numerous in clades such as Monodontidae (narwhal, beluga), Ziphiidae (beaked whales), Physeteroidea (sperm whales), and Phocoenidae (porpoises) that are characterized by simpler enamel or even enamelless teeth. Further, several higher-level taxa (e.g., Hyperoodon, Kogiidae, Monodontidae) possess shared inactivating mutations in one or more enamel genes, which suggests loss of function of these genes in the common ancestor of each clade. We also performed selection (dN/dS) analyses on a concatenation of these genes and used linear regression and Spearman's rank-order correlation to test for correlations between enamel complexity and two different measures of selection intensity (# of inactivating mutations per million years, dN/dS values). Selection analyses revealed that relaxed purifying selection is especially prominent in physeteroids, monodontids, and phocoenids. Linear regressions and correlation analyses revealed a strong negative correlation between selective pressure (dN/dS values) and enamel complexity. Stronger purifying selection (low dN/dS) is found on branches with more complex enamel and weaker purifying selection (higher dN/dS) occurs on branches with less complex enamel or enamelless teeth. As odontocetes diversified into a variety of feeding modes, in particular, the suction capture of prey, a reduced reliance on the dentition for prey capture resulted in the relaxed selection of genes that are critical to enamel development.

Factors associated with contact tracing compliance among communities of color in the first year of the COVID-19 pandemic.

RATIONALE: The disproportionate impact of COVID-19 on communities of color has raised questions about the unique experiences within these communities not only in terms of becoming infected with COVID-19 but also mitigating its spread. The utility of contact tracing for managing community spread and supporting economic reopening is contingent upon, in part, compliance with contact tracer requests. OBJECTIVE: We investigated how trust in and knowledge of contact tracers influence intentions to comply with tracing requests and whether or not these relationships and associated antecedent factors differ between communities of color. METHOD: Data were collected from a U.S. sample of 533 survey respondents from Fall (2020) to Spring 2021. Multi-group SEM tested quantitative study hypotheses separately for Black, AAPI, Latinx, and White sub-samples. Qualitative data were collected via open-ended questions to inform the roles of trust and knowledge in contact tracing compliance. RESULTS: Trust in contact tracers was associated with increased intentions to comply with tracing requests and significantly mediated the positive relationship between trust in healthcare professionals and government health officials with compliance intentions. Yet, the indirect effects of trust in government health officials on compliance intentions were significantly weaker for the Black, Latinx, and AAPI samples compared to Whites, suggesting this strategy for increasing compliance may not be as effective among communities of color. Health literacy and contact tracing knowledge played a more limited role in predicting compliance intentions directly or indirectly, and one that was inconsistent across racial groups. Qualitative results reinforce the importance of trust relative to knowledge for increasing tracing compliance intentions. CONCLUSIONS: Building trust in contact tracers, more so than increasing knowledge, may be key to encouraging contact tracing compliance. Differences among communities of color and between these communities and Whites inform the policy recommendations provided for improving contact tracing success.

Study to Assess Content Validity and Interrater and Intrarater Reliability of the Inclusion Body Myositis Functional Rating Scale.

Background and Objectives: Sporadic inclusion body myositis (IBM) is a rare, muscle-wasting disease that negatively affects health-related quality of life. Although a measure that has been developed to assess the impact of IBM, the IBM Functional Rating Scale (IBMFRS) has limited evidence of content validity or reliability, and what constitutes a meaningful change threshold; this study was conducted to address these gaps. Methods: Adult patients with a clinical diagnosis of IBM from the United Kingdom and disease area expert health care professionals from the United States and United Kingdom took part in this study. This study consisted of 5 stages including phone interviews (physicians), face-to-face interviews (patients), face-to-face ratings, phone ratings, and ratings of videos using the IBMFRS. Results: The IBMFRS adequately captures all core functional impacts of IBM, which was corroborated by both patient participants and physicians when debriefing the measure. Physicians and patient participants all thought any change on the measure would be meaningful change for a patient, either improvement or worsening. The quantitative analysis demonstrated good interrater reliability for face-to-face ratings (intraclass correlation coefficient [ICC] >0.7) and for video ratings (ICC >0.9). Intrarater reliability was excellent for face-to-face and video ratings (ICC >0.9). Equivalence between the modes of administration, face-to-face vs phone, was also excellent (ICC >0.9). Discussion: The IBMFRS is content valid in assessing the key functional impacts of IBM, and any change would be meaningful. It is reliable both within and across raters, and there is equivalence between different modes of administration (face-to-face vs phone).

Understanding the patient experience of Classic Galactosemia in pediatric and adult patients: increased disease burden, challenges with daily living, and how they evolve over time.

BACKGROUND: Classic Galactosemia (CG) is a rare, autosomal recessive condition. Newborn screening and a timely galactose-restricted diet can resolve acute symptoms and decrease fatalities, but significant chronic, progressive morbidities remain and significantly impact daily life. The objective of this study was to better understand the burden of disease in children and adults with CGs and describe how morbidities evolve over time. METHODS: A total of 49 individuals with CG from the United States (US) were included in the qualitative surveys (13 adults [9 self-reported] and 36 pediatric patients). Fifteen follow-up interviews were conducted with 5 adults and 10 caregivers, discussing 17 individuals with CG overall (2 caregivers each discussed 2 children). RESULTS: Qualitative survey and interview data demonstrated the substantial burden of CG. Difficulties in a wide range of functions were experienced, which included: speech articulation; language and communication; cognition, memory and learning; emotions; and social interactions. Most difficulties appeared in childhood and persisted or worsened with age. Most adults did not live independently. Others lived semi-independently and experienced many daily challenges and required support. Caregivers also described the burden of caring for someone with CG and spoke about the impact this has on their day-to-day life, work, and relationships. CONCLUSIONS: These findings demonstrate the pronounced and persistent burden of disease encountered by individuals with CG, and that the condition has a significant impact on the quality of life of caregivers.