Measuring Cognitive Function and Cognitive Decline with Response Time Data in NSHAP.

OBJECTIVES: Scholarly, clinical, and policy interest in cognitive function has grown over the last several decades in part due to large increases in Alzheimer's Disease and related dementias as populations age. However, adequate measures of cognitive function have not been available in many research data sets. We argue that a wealth of previously unexploited survey data exists to model cognition and cognitive decline. METHODS: We use metadata of the time it takes older respondents in the National Social Life, Health and Aging Survey, which we label response times (RT), to answer questions in a standard cognitive assessment. We compare several measures of RT to a survey-adapted form of the Montreal Cognitive Assessment (MoCA). RESULTS: We show that RT predict both concurrent and future MoCA scores. Our results show that longer and more varied RT at baseline predict lower MoCA scores five year later, net of baseline scores and controls. We also show that the effect of RT measures on predicting current MoCA differ for individuals of different races and ages, but are not different by gender. DISCUSSION: Our paper demonstrates that RT constitute a separate powerful measure of cognitive functioning. RT may be remarkably useful both to clinicians and social scientists because they can increase accuracy of cognitive assessment without increasing the time it takes to administer the assessment.

Personalising airway clearance in chronic suppurative lung diseases: a scoping review.

Background: Personalised airway clearance techniques are commonly recommended to augment mucus clearance in chronic suppurative lung diseases. It is unclear what current literature tells us about how airway clearance regimens should be personalised. This scoping review explores current research on airway clearance technique in chronic suppurative lung diseases, to establish the extent and type of guidance in this area, identify knowledge gaps and determine the factors which physiotherapists should consider when personalising airway clearance regimens. Methods: Systematic searching of online databases (MEDLINE, EMBASE, CINAHL, PEDro, Cochrane, Web of Science) was used to identify full-text publications in the last 25 years that described methods of personalising airway clearance techniques in chronic suppurative lung diseases. Items from the TIDieR framework provided a priori categories which were modified based on the initial data to develop a "Best-fit" framework for data charting. The findings were subsequently transformed into a personalisation model. Results: A broad range of publications were identified, most commonly general review papers (44%). The items identified were grouped into seven personalisation factors: physical, psychosocial, airway clearance technique (ACT) type, procedures, dosage, response and provider. As only two divergent models of ACT personalisation were found, the personalisation factors identified were then used to develop a model for physiotherapists. Conclusions: The personalisation of airway clearance regimens is widely discussed in the current literature, which provides a range of factors that should be considered. This review summarises the current literature, organising findings into a proposed airway clearance personalisation model, to provide clarity in this field.

The Impact on Parents of Diagnosing PCD in Young Children.

Primary ciliary dyskinesia (PCD) is an incurable, rare, inherited, chronic condition. Treatment includes the regular clearing of airway mucus, aggressive treatment of infections and management of hearing loss. Caregiver burden has not been explored, hence we interviewed 18 mothers and 6 fathers of children under 6 years to understand the impact of diagnostic testing and implications of a positive diagnosis. Interviews were transcribed and thematically analysed and five key themes were identified. These included the parents' experiences following child's diagnosis, impact of child's treatment regimen on parent, impact of child's health status on parent, parent's coping strategies, and parental concerns for the future. Parents described their diagnostic journey, with the findings revealing how a lack of awareness among clinicians of the PCD symptom pattern can lead to a delayed diagnosis. Parents discussed the emotional and practical impact of a PCD diagnosis and the coping strategies employed to deal with challenges arising following a diagnosis. Parents use a variety of different lifestyle changes to accommodate their child's treatment regimen and to cope with disruptive life events such as the COVID-19 pandemic. This study provides valuable insights into parental adjustment and adaptation to a PCD diagnosis and management regimen. Going forward, this research highlights the need for integrated social care for PCD patients and their families.

Standardised clinical data from patients with primary ciliary dyskinesia: FOLLOW-PCD.

Clinical data on primary ciliary dyskinesia (PCD) are limited, heterogeneous and mostly derived from retrospective chart reviews, leading to missing data and unreliable symptoms and results of physical examinations. We need standardised prospective data collection to study phenotypes, severity and prognosis and improve standards of care. A large, international and multidisciplinary group of PCD experts developed FOLLOW-PCD, a standardised clinical PCD form and patient questionnaire. We identified existing forms for clinical data collection via the Better Experimental Approaches to Treat PCD (BEAT-PCD) COST Action network and a literature review. We selected and revised the content items with the working group and patient representatives. We then revised several drafts in an adapted Delphi process, refining the content and structure. FOLLOW-PCD has a modular structure, to allow flexible use based on local practice and research focus. It includes patient-completed versions for the modules on symptoms and lifestyle. The form allows a comprehensive standardised clinical assessment at baseline and for annual reviews and a short documentation for routine follow-up. It can either be completed using printable paper forms or using an online REDCap database. Data collected in FOLLOW-PCD version 1.0 is available in real-time for national and international monitoring and research. The form will be adapted in the future after extensive piloting in different settings and we encourage the translation of the patient questionnaires to multiple languages. FOLLOW-PCD will facilitate quality research based on prospective standardised data from routine care, which can be pooled between centres, to provide first-line and real-time evidence for clinical decision-making.

Airway Clearance Techniques for Primary Ciliary Dyskinesia; is the Cystic Fibrosis literature portable?

Primary Ciliary Dyskinesia (PCD) is a rare inherited disease with impaired mucociliary clearance. Airway clearance techniques (ACTs) are commonly recommended for patients with PCD to facilitate mucus clearance, despite a lack of evidence in this group. Current physiotherapy practice in PCD is based on evidence extrapolated from the field of Cystic Fibrosis (CF). This paper focuses on the available evidence and outlines challenges in extrapolating evidence between the conditions for best clinical practice.

The Methuselah Effect: The Pernicious Impact of Unreported Deaths on Old-Age Mortality Estimates.

We examine inferences about old-age mortality that arise when researchers use survey data matched to death records. We show that even small rates of failure to match respondents can lead to substantial bias in the measurement of mortality rates at older ages. This type of measurement error is consequential for three strands in the demographic literature: (1) the deceleration in mortality rates at old ages; (2) the black-white mortality crossover; and (3) the relatively low rate of old-age mortality among Hispanics, often called the "Hispanic paradox." Using the National Longitudinal Survey of Older Men matched to death records in both the U.S. Vital Statistics system and the Social Security Death Index, we demonstrate that even small rates of missing mortality matching plausibly lead to an appearance of mortality deceleration when none exists and can generate a spurious black-white mortality crossover. We confirm these findings using data from the National Health Interview Survey matched to the U.S. Vital Statistics system, a data set known as the "gold standard" (Cowper et al. 2002) for estimating age-specific mortality. Moreover, with these data, we show that the Hispanic paradox is also plausibly explained by a similar undercount.

Brown Adipose Tissue Exhibits a Glucose-Responsive Thermogenic Biorhythm in Humans.

High abundance of brown adipose tissue (BAT) is linked to lower glycaemia in humans, leading to the belief that BAT may protect against diabetes. The relationship between BAT glucose utilization and systemic glucose homeostasis has not been defined. In this paper we have characterized glycaemic excursions and BAT thermogenic responses in human brown adipocytes, BAT explants, and healthy adults through supraclavicular temperature profiling, revealing their circadian coupling in vivo and in vitro, orchestrated by UCP1, GLUT4, and Rev-erbα biorhythms. Extent of glycated haemoglobin also correlated positively with environmental temperature among community-dwelling patients. These data uncover potential crosstalk between BAT and glucose regulatory pathways, evident on cellular, tissue, individual, and population levels, and provide impetus to search for BAT harnessing strategies for therapeutic purposes.

CORRECTING FOR MEASUREMENT ERROR IN LATENT VARIABLES USED AS PREDICTORS.

This paper represents a methodological-substantive synergy. A new model, the Mixed Effects Structural Equations (MESE) model which combines structural equations modeling and item response theory is introduced to attend to measurement error bias when using several latent variables as predictors in generalized linear models. The paper investigates racial and gender disparities in STEM retention in higher education. Using the MESE model with 1997 National Longitudinal Survey of Youth data, I find prior mathematics proficiency and personality have been previously underestimated in the STEM retention literature. Pre-college mathematics proficiency and personality explain large portions of the racial and gender gaps. The findings have implications for those who design interventions aimed at increasing the rates of STEM persistence among women and under-represented minorities.

Predictive Inference Using Latent Variables with Covariates.

Plausible values (PVs) are a standard multiple imputation tool for analysis of large education survey data, which measures latent proficiency variables. When latent proficiency is the dependent variable, we reconsider the standard institutionally generated PV methodology and find it applies with greater generality than shown previously. When latent proficiency is an independent variable, we show that the standard institutional PV methodology produces biased inference because the institutional conditioning model places restrictions on the form of the secondary analysts' model. We offer an alternative approach that avoids these biases based on the mixed effects structural equations model of Schofield (Modeling measurement error when using cognitive test scores in social science research. Doctoral dissertation. Department of Statistics and Heinz College of Public Policy. Pittsburgh, PA: Carnegie Mellon University, 2008).

Effect of a home intervention program on pediatric asthma in an environmental justice community.

Asthma prevalence rates are at an all-time high in the United States with over 25 million persons diagnosed with asthma. African Americans and other minorities have higher asthma prevalence and higher exposure to environmental factors that worsen asthma as compared to Caucasians. This article describes the evaluation of an inner-city home-based asthma education and environmental remediation program that addressed both indoor and outdoor triggers through collaboration between a health system and local environmental justice organization. The program enrolled 132 children older than 2.5 years and centers on a 4- to 6-week intervention with peer counselors using the U.S. Environmental Protection Agency Asthma Home Environment Checklist and the You Can Control Asthma curriculum. Families receive asthma-friendly environmental home kits. Peer counselors reinforce key asthma management messages and facilitate the completion of Asthma Action Plans. The environmental justice community partner organized block cleanups to reduce outdoor triggers. The evaluation used a pretest-posttest design to assess changes in client behavior and asthma symptoms. Data were collected at baseline and during a 6-month postintervention period. Participants saw enhanced conditions on asthma severity and control. The improvement was greatest for children whose asthma was considered "severe" based on the validated Asthma Control Test. Other positive results include the following: greater completion of Asthma Action Plans, significant reduction in the number of emergency room visits (p = .006), and substantial decreases in school absenteeism (p = .008) and use of rescue medications (p = .049). The evaluation suggests that the program was effective in improving asthma self-management in a high-risk population living within an environmental justice community.

Measurement Error in the AFQT in the NLSY79.

Many promising efforts in the social sciences aim to measure future outcomes (such as wages or health outcomes) given some base level of human capital or ability. They typically fail to recognize the proxies for human capital are all measured with error, creating bias in regression analysis. Here I show how item level data offers the opportunity to improve a broad range of economic, social and psychometric studies; an opportunity now enhanced significantly by the new release of item response level data for the Armed Forces Qualifying Test in the 1979 National Longitudinal Survey of Youth.

Growing up with Primary Ciliary Dyskinesia in Bradford, UK: exploring patients experiences as a physiotherapist.

Primary Ciliary Dyskinesia (PCD) is a condition which causes impaired mucociliary clearance, resulting in sputum retention and recurrent respiratory tract infections. Physiotherapy, in the form of airway clearance techniques and exercise is recommended to patients with PCD to facilitate sputum clearance. As children diagnosed with PCD develop into adults, understanding their experiences of growing up with this long-term condition and undertaking physiotherapy may help to provide insight to clinicians. No previous research has been published which explores the lived experiences of children and young people with PCD. The prevalence of PCD in Bradford in the North of the UK is unusually high, signifying the importance of understanding the experiences of this patient population. This qualitative study used Interpretive Phenomenological Analysis to allow the researcher, as a physiotherapist, to investigate the lived experiences of five paediatric patients with PCD. While patients' experiences are all unique, three themes emerged across the analysis of the interviews: (1) the experiences of day to day life with the symptoms and treatment burden of PCD; (2) participants' awareness of their own symptoms and knowledge of PCD; and (3) the development of mastery skills and devolution of management from the family to the growing child. The results from this study suggested that facilitation of disease acceptance, strategies to increase patient empowerment, the use of patient-centred communication and understanding the contextualisation of patients' experiences may all help to guide clinical practice.

The use of cognitive ability measures as explanatory variables in regression analysis.

Cognitive ability measures are often taken as explanatory variables in regression analysis, e.g., as a factor affecting a market outcome such as an individual's wage, or a decision such as an individual's education acquisition. Cognitive ability is a latent construct; its true value is unobserved. Nonetheless, researchers often assume that a test score, constructed via standard psychometric practice from individuals' responses to test items, can be safely used in regression analysis. We examine problems that can arise, and suggest that an alternative approach, a "mixed effects structural equations" (MESE) model, may be more appropriate in many circumstances.