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INTRODUCTION: The Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study is a randomized clinical trial investigating the psychosocial, behavioral, and cognitive impacts of apolipoprotein E (APOE) genotype disclosure for late‐onset Alzheimer's disease (AD) among Latinos. METHODS: We used address‐based sampling to recruit English‐ and Spanish‐speaking Latinos aged 40–64 living in northern Manhattan for a community‐based Baseline Survey about their knowledge and opinions about AD. Participants eligible for the clinical trial were invited to complete an Introductory Session, including AD and genetics education and informed consent, before undergoing genotyping for APOE. Participants were then randomized to learn their risk of AD by age 85 (range: 21%–55%) based on either Latino ethnicity and family history alone, or the same factors and their APOE genotype. Risk information is provided in a semi‐structured genetic counseling session. Psychological impacts, health‐related behavioral changes, and cognitive performance are evaluated 6 weeks, 9 months, and 15 months later via surveys and qualitative interviews. To promote cultural competence, study materials were developed by a multidisciplinary team including bilingual and bicultural staff, Latinx content experts, and genetic counselors. RESULTS: We sent invitations to 91,433 households; 5542 (6.1%) responded, 2120 completed the Baseline Survey (78.5% online; 21.5% via computer‐assisted telephone interview), and 2087 were deemed eligible, yielding a response rate of 2.3%. Many participants expressed appreciation for the opportunity to contribute to AD research. We randomized 374 participants for the clinical trial. DISCUSSION: We describe the study design, recruitment and retention strategies, and interventions employed in the IDEAL Study. Our design provides a framework for future studies using rigorous mixed methods. Our findings may facilitate the development of culturally‐sensitive educational materials about AD and genetic testing, as well as genetic counseling protocols, to improve coping and adjustment in response to receiving risk information. Highlights: The Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study investigates apolipoprotein E (APOE) genotype disclosure among Latinos using mixed methods.We recruited adults 40–64 years of age without Alzheimer's disease (AD) for a community‐based survey and randomized trial.Trial participants receives AD risk estimates with or without APOE genotypes.Psychosocial, behavioral, and cognitive impacts are assessed over 15 months.Findings may inform AD educational materials and genetic counseling protocols. [ABSTRACT FROM AUTHOR]

We present the results of a multiwavelength Professional–Amateur campaign to study the behaviour of flares from the active M1.5V star binary CR Draconis. CR Dra was observed with Transiting Exoplanet Survey Satellite (TESS) 20-s photometry, Swift near-ultraviolet (NUV) grism spectroscopy and with ground-based optical photometry and spectroscopy from a global collaboration of amateur astronomers. We detected 14 flares with TESS and Swift simultaneously, one of which also had simultaneous ground-based photometry and spectroscopy. We used the simultaneous two-colour optical and NUV observations to characterize the temperature evolution of the flare and test the accuracy of using optical data to predict NUV emission. We measured a peak temperature of |$7100^{+150}_{-130}$| K for this flare, cooler than the typically assumed 9000 K blackbody model used by flare studies. We also found that the 9000 K blackbody overestimated the NUV flux for other flares in our sample, which we attributed to our Swift observations occurring during flare decays, highlighting the phase-dependence for the accuracy of flare models. [ABSTRACT FROM AUTHOR]

Background: Alzheimer's disease (AD) risk is markedly increased among APOE ε4/ε4 homozygotes. Previous studies of APOE genotype disclosure impact have included few ethnic minorities. This study addresses this gap by investigating the immediate impact of disclosing an APOE ε4/ε4 genotype in the Información de la Enfermedad de Alzheimer para Latinos (IDEAL) study, a Latino community‐based study. Methods: IDEAL participants attended semi‐structured genetic counseling sessions conducted via Zoom in Spanish or English by certified genetic counselors. Sessions included a PowerPoint presentation covering genetics, genotype results, risk estimates, and AD prevention methods. Risk estimates were based on data from the Washington Heights‐Inwood Columbia Aging Project, a longitudinal study conducted in the same communities. The estimate of risk to age 85 among ε4 homozygotes was 55%. We transcribed session recordings and conducted content analysis. Results: Eleven ε4/ε4 participants aged 41‐64 attended risk evaluation sessions (English 8, Spanish 3). Six had a family history of AD (first‐degree 1, distant 5). Nine were women and two men. Overall, participants did not show strong emotional reactions. Many expressed surprise, accompanied by thoughtful reflections on the connection between their AD risk and perceived memory problems or emotional well‐being. Participants generally appreciated the information provided during the genetic counseling sessions because it offered insights into the importance of AD risk awareness and prevention strategies. Conclusion: Latinos at high AD genetic risk showed limited immediate emotional response to risk disclosure and appreciated the information that was shared. Longitudinal analyses may provide further insight into the impacts of this disclosure. This study is supported by the National Institute on Aging (R01 AG062528) and registered in ClinicalTrials.gov (NCT04471779). Keywords: Alzheimer's disease, APOE ε4ε4, genetic counseling, Latinos, qualitative research, risk disclosure [ABSTRACT FROM AUTHOR]

Objective: Hispanics continue to face challenges when trying to access health care, including epilepsy care and genetic‐related health care services. This study examined epilepsy genetic knowledge and beliefs in this historically underserved population. Methods: Questionnaires were completed by 641 adults with epilepsy without identified cause, of whom 122 self‐identified as Hispanic or Latino and 519 as non‐Hispanic. Participants were asked about their views on the contribution of genetics to the cause of their epilepsy ("genetic attribution"), optimism for advancements in epilepsy genetic research ("genetic optimism"), basic genetic knowledge, and epilepsy‐specific genetic knowledge. Generalized linear models were used to compare the two groups in the means of quantitative measures and percents answered correctly for individual genetic knowledge items. Analyses were adjusted for age, sex, education, religion, family history of epilepsy, and time since last seizure. Results: Hispanics did not differ from non‐Hispanics in genetic attribution, genetic optimism, or number of six basic genetic knowledge items answered correctly. The number of nine epilepsy‐specific genetic knowledge items answered correctly was significantly lower for Hispanics than non‐Hispanics (adjusted mean = 6.0 vs. 6.7, p <.001). After adjustment for education and other potential mediators, the proportion answered correctly was significantly lower for Hispanics than non‐Hispanics for only two items related to family history and penetrance of epilepsy‐related genes. Only 54% of Hispanics and 61% of non‐Hispanics answered correctly that "If a person has epilepsy, his or her relatives have an increased chance of getting epilepsy." Significance: Despite large differences in sociodemographic variables including education, most attitudes and beliefs about genetics were similar in Hispanics and non‐Hispanics. Epilepsy‐specific genetic knowledge was lower among Hispanics than non‐Hispanics, and this difference was mostly mediated by differences in demographic variables. Genetic counseling should address key concepts related to epilepsy genetics to ensure they are well understood by both Hispanic and non‐Hispanic patients. [ABSTRACT FROM AUTHOR]

Objective: This study addresses the contribution of genetics‐related concerns to reduced childbearing among people with epilepsy. Methods: Surveys were completed by 606 adult patients with epilepsy of unknown cause at our medical center. Poisson regression analysis was used to assess the relations of number of offspring to: (1) genetic attribution (GA: participants' belief that genetics was a cause of their epilepsy), assessed via a novel scale developed from four survey items (Cronbach's alpha =.89), (2) participants' estimates of epilepsy risk in the child of a parent with epilepsy (1%, 5%–10%, 25%, and 50%–100%), and (3) participants' reports of the influence on their reproductive decisions of "the chance of having a child with epilepsy" (none/weak/moderate, strong/very strong). Analyses were adjusted for age, education, race/ethnicity, religion, type of epilepsy (generalized, focal, and both/unclassifiable), and age at epilepsy onset (<10, 10–19, and ≥20 years). Results: Among participants 18–45 years of age, the number of offspring decreased significantly with increasing GA (highest vs lowest GA quartile rate ratio [RR] =.5, p <.001), and increasing estimated epilepsy risk in offspring (with 5%–10% as referent because it is closest to the true value, RR for 25%:.7, p =.05; RR for 50%–100%:.6, p =.03). Number of offspring was not related to the reported influence of "the chance of having a child with epilepsy" on reproductive decisions. Among participants >45 years of age, the number of offspring did not differ significantly according to GA quartile or estimated offspring epilepsy risk. However, those reporting a strong/very strong influence on their reproductive decisions of "the chance of having a child with epilepsy" had only 60% as many offspring as others. Significance: These findings suggest that overestimating the risk of epilepsy in offspring can have important consequences for people with epilepsy. Patient and provider education about recurrence risks and genetic testing options to clarify risks are critical, given their potential influence on reproductive decisions. [ABSTRACT FROM AUTHOR]

Background: Because of the prevalence and impact of sleep disorders in Parkinson's disease (PD), valid instruments for their evaluation and monitoring are necessary. However, some nocturnal sleep disorders may go unnoticed by patients themselves. Objectives: To validate a pan‐Spanish version of the Parkinson's Disease Sleep Scale Version 2 (PDSS‐2) and to test the relationships between the PDSS‐2 and a PDSS‐2 roommate version. Methods: PD patients (n = 399) from seven Spanish‐speaking countries were included. In addition to the tested PDSS‐2 scales, valid measures for sleep disorders and both motor and nonmotor manifestations were applied. Acceptability, dimensionality, reliability, precision, and construct validity were explored, as well as discrepancies and agreement between the PDSS‐2 and the roommate version. Results: PDSS‐2 showed negligible floor and ceiling effects. Four factors (57% of the variance) were identified. Reliability parameters were satisfactory: alpha = 0.84; item homogeneity coefficient = 0.27; corrected item total correlation = 0.28 to 0.61; and test‐retest reliability (average kappa = 0.70; intraclass correlation coefficient [ICC] = 0.83). The standard error of measurement was 5.84, and correlations with other scales assessing nocturnal sleep were high (rS = 0.62–0.56). In comparison to the patient‐based total score, the by proxy total score showed no significant difference, high correlation (rS = 0.70), and acceptable agreement (ICC = 0.69), but there were discrepancies in two or more points in 18% of item scores. Conclusions: The Spanish version of the PDSS‐2 has shown satisfactory clinimetric attributes. Acceptability and precision data are presented for the first time. The PDSS‐2 roommate version could be useful to complement the patient‐based evaluation, but additional studies are needed. [ABSTRACT FROM AUTHOR]

Objectives. To assess the psychometric attributes of the Apathy Scale- (AS-) Spanish version in patients with advanced Parkinson's disease (APD). Materials and Methods. Over 6 months, 61 patients participated in a clinical study of levodopa-carbidopa intestinal gel (LCIG) and were evaluated using the AS and other clinical tools. Various psychometric attributes of the AS were assessed. Results. Patients (60.7% men) were aged 68.02 ± 7.43 years, with 12.57 ± 5.97 years from PD diagnosis. Median HY of patients in "on state" was 2 (range, 1–4), and mean levodopa equivalent daily dose was 1455.98 ± 456.00 mg. Overall, the parameters of feasibility/acceptability were satisfactory, except for a moderate-to-high floor effect in AS items but not in its total score (both 3.3%). Cronbach's alpha was 0.78, while item homogeneity coefficient was 0.21. Almost all items (11/14) reached acceptable item-total corrected correlations (rS = 0.16–0.50). AS total score was moderately correlated with Beck Depression Inventory (0.34) and with Non-Motor Symptoms Scale domains 2 (sleep/fatigue, 0.35), 3 (mood/apathy, 0.56), and 5 (attention/memory, 0.41). There were no significant differences between AS total scores by established groups of sex, time from diagnosis, HY, and Clinical Global Impression-Severity Scale. Following LCIG treatment, there was no significant change in the AS total score. The relative change was 5.56%, the standard error of the difference was 4.17, and Cohen's d effect was 0.10. Conclusions. The AS showed satisfactory feasibility, acceptability, scaling assumptions, internal consistency, and convergent validity. Responsiveness parameters were poor, probably due to the characteristics of the clinical study from which these data came. This trial is registered with NCT02289729. [ABSTRACT FROM AUTHOR]

Background: Little research has been conducted regarding the relationship between sleep disorders and different pain types in Parkinson's disease (PD). Objective: To explore the influence of the various pain subtypes experienced by PD patients on sleep. Methods: Three hundred consecutive PD patients were assessed with the PD Sleep Scale‐Version 2 (PDSS‐2), King's PD Pain Scale (KPPS), King's PD Pain Questionnaire (KPPQ), Visual Analog Scales for Pain (VAS‐Pain), and Hospital Anxiety and Depression Scale. Results: According to the PDSS‐2, 99.3% of our sample suffered from at least one sleep issue. Those who reported experiencing any modality of pain suffered significantly more from sleep disorders than those who did not (all, P < 0.003). The PDSS‐2 showed moderate‐to‐high correlations with the KPPS (rS = 0.57), KPPQ (0.57), and VAS‐Pain (0.35). When PDSS‐2 items 10 to 12 (pain‐related) were excluded, the correlation values decreased to 0.50, 0.51, and 0.28, respectively, while these items showed moderate‐to‐high correlations with KPPS (0.56), KPPQ (0.54), and VAS‐Pain (0.42). Among the variables analyzed, multiple linear regression models suggested that KPPS and KPPQ were the most relevant predictors of sleep disorders (as per the PDSS‐2), although following exclusion of PDSS‐2 pain items, depression was the relevant predictor. Depression and anxiety were the most relevant predictors in the analysis involving the VAS‐Pain. Regression analysis, considering only the KPPS domains, showed that nocturnal and musculoskeletal pains were the best predictors of overall nocturnal sleep disorder. Conclusions: Pain showed a moderate association with nocturnal sleep dysfunction in PD. Some pain subtypes had a greater effect on sleep than others. [ABSTRACT FROM AUTHOR]

Introduction: The Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study is a randomized clinical trial investigating the psychosocial, behavioral, and cognitive impacts of apolipoprotein E ( APOE ) genotype disclosure for late-onset Alzheimer's disease (AD) among Latinos., Methods: We used address-based sampling to recruit English- and Spanish-speaking Latinos aged 40-64 living in northern Manhattan for a community-based Baseline Survey about their knowledge and opinions about AD. Participants eligible for the clinical trial were invited to complete an Introductory Session, including AD and genetics education and informed consent, before undergoing genotyping for APOE . Participants were then randomized to learn their risk of AD by age 85 (range: 21%-55%) based on either Latino ethnicity and family history alone, or the same factors and their APOE genotype. Risk information is provided in a semi-structured genetic counseling session. Psychological impacts, health-related behavioral changes, and cognitive performance are evaluated 6 weeks, 9 months, and 15 months later via surveys and qualitative interviews. To promote cultural competence, study materials were developed by a multidisciplinary team including bilingual and bicultural staff, Latinx content experts, and genetic counselors., Results: We sent invitations to 91,433 households; 5542 (6.1%) responded, 2120 completed the Baseline Survey (78.5% online; 21.5% via computer-assisted telephone interview), and 2087 were deemed eligible, yielding a response rate of 2.3%. Many participants expressed appreciation for the opportunity to contribute to AD research. We randomized 374 participants for the clinical trial., Discussion: We describe the study design, recruitment and retention strategies, and interventions employed in the IDEAL Study. Our design provides a framework for future studies using rigorous mixed methods. Our findings may facilitate the development of culturally-sensitive educational materials about AD and genetic testing, as well as genetic counseling protocols, to improve coping and adjustment in response to receiving risk information., Highlights: The Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study investigates apolipoprotein E ( APOE ) genotype disclosure among Latinos using mixed methods.We recruited adults 40-64 years of age without Alzheimer's disease (AD) for a community-based survey and randomized trial.Trial participants receives AD risk estimates with or without APOE genotypes.Psychosocial, behavioral, and cognitive impacts are assessed over 15 months.Findings may inform AD educational materials and genetic counseling protocols., Competing Interests: Neither the study's principal investigators (R.O. and K.S.) nor any of the other coauthors has any conflict of interest to disclose. Author disclosures are available in the supporting information., (© 2024 The Author(s). Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)