Mortality in Women across the FMR1 CGG Repeat Range: The Neuroprotective Effect of Higher Education.

Higher education has been shown to have neuroprotective effects, reducing the risk of Alzheimer's and Parkinson's diseases, slowing the rate of age-related cognitive decline, and is associated with lower rates of early mortality. In the present study, the association between higher education, fragile X messenger ribonucleoprotein 1 (FMR1) cytosine-guanine-guanine (CGG) repeat number, and mortality before life expectancy was investigated in a population cohort of women born in 1939. The findings revealed a significant interaction between years of higher education and CGG repeat number. Counter to the study's hypothesis, the effects of higher education became more pronounced as the number of CGG repeats increased. There was no effect of years of higher education on early mortality for women who had 25 repeats, while each year of higher education decreased the hazard of early mortality by 8% for women who had 30 repeats. For women with 41 repeats, the hazard was decreased by 14% for each additional year of higher education. The interaction remained significant after controlling for IQ and family socioeconomic status (SES) measured during high school, as well as factors measured during adulthood (family, psychosocial, health, and financial factors). The results are interpreted in the context of differential sensitivity to the environment, a conceptualization that posits that some people are more reactive to both negative and positive environmental conditions. Expansions in CGG repeats have been shown in previous FMR1 research to manifest such a differential sensitivity pattern.

Health Effects of Sleep Quality in Premutation Carrier Mothers of Individuals With Fragile X Syndrome.

Sleep plays an integral role in supporting well-being, and sleep difficulties are common in mothers of individuals with developmental disabilities, including fragile X syndrome (FXS). This study assessed whether the effects of sleep quality on physical health and depression are exacerbated by genetic risk factors (CGG repeats) in FMR1 premutation carrier mothers of individuals with FXS. Poor sleep quality predicted a greater number of physical health conditions for mothers with CGG repeats in the mid-premutation range (90-110 repeats), but not for those in the lower (< 90 repeats) or higher (> 110 repeats) ends of the range. A significant association between poor sleep quality and maternal depressive symptoms was also observed, but there was no evidence that this effect varied by level of genetic vulnerability. This research extends our understanding of individual differences in the effects of sleep quality among mothers of individuals with FXS.

Improving Retention of Diverse Samples in Longitudinal Research on Developmental Disabilities.

Developmental disabilities (DD) research has depended on volunteer and clinical samples, with limited racial/ethnic diversity. This study focused on improving diversity and retention in DD research. The sample included 225 parents with a child with DD and 4,002 parents without children with DD from diverse racial/ethnic groups, drawn from Midlife in the United States, a national longitudinal study. Unexpectedly, parents of children with DD from diverse racial/ethnic groups were more likely to participate longitudinally than other groups. Relative participant payment was a factor that enhanced their likelihood of retention. This research illustrates how large national studies can be leveraged to increase representativeness and ongoing participation of diverse racial/ethnic groups, especially in combination with other factors, such as parenting a child with DD.

Social Network Diversity and Mental Health Among Mothers of Individuals With Autism.

The present study examined the associations between networks of social relationships and psychological well-being among mothers of adolescents and adults with autism (n = 352) over a 12-year period of time. A structural equation modeling approach was used to delineate the relative impacts of network size and relationship diversity on maternal mental health, and to assess whether such effects are bidirectional. Mothers with more diverse relationships experienced reductions in depression and anxiety symptoms over time, and the psychological benefits of diversity remained after adjusting for network size. Results also suggest bidirectional links between network size, diversity, and maternal mental health. Research and clinical implications are discussed.

The effect of college degree attainment on neurodegenerative symptoms in genetically at-risk women.

Using longitudinal data, the present study examined the association between college degree attainment and the manifestation of neurodegenerative symptoms among women (n = 93) at elevated genetic risk. The neurodegenerative symptoms investigated in this study are due to FXTAS (Fragile X-associated Tremor/Ataxia Syndrome), a condition with onset after age 50. Those at risk for FXTAS have a mutation of a single gene found on the X chromosome. FXTAS is characterized by intention tremor, gait ataxia, executive function deficits, memory issues, and neuropathy. College degree attainment has been shown to provide neuroprotective effects in the general population, delaying the development of neurodegenerative conditions such as Alzheimer's disease. For this reason, college degree attainment is a potentially salient resource for those at risk of FXTAS. The results of the present research indicated significantly more severe FXTAS symptoms in women who did not attain a college degree as compared with those who were college graduates, although the two groups were similar in age, genetic risk, household income, health behaviors, and general health problems. Furthermore, symptoms in those who did not attain a college degree worsened over the 9-year study period at a significantly faster rate than the college graduates. The association between college degree attainment and FXTAS symptoms was significantly mediated by depression, which was lower among the graduates than those who did not attain a college degree. Thus, the present research is an example of how a sociodemographic factor can mitigate neurodegenerative conditions in genetically at-risk adults.

Racial/ethnic health disparities among children with special health care needs in Boston, Massachusetts.

BACKGROUND: Little is known about the factors that contribute to racial/ethnic disparities among children with special health care needs (CSHCN). OBJECTIVE: To quantify the contributions of determinants of racial/ethnic disparities in health and health care among CSHCN in Boston, Massachusetts. METHODS: A sample of 326 Black, Latino, and white CSHCN was drawn from the Boston Survey of Children's Health, a city-wide representative sample of children. The study implemented Oaxaca-Blinder-style decomposition techniques to examine the relative contributions of health resources and child-, family-, and neighborhood-level factors to disparities in four outcomes: health status, barriers to medical care, oral health status, and utilization of preventive dental care. RESULTS: White CSHCN had a greater likelihood of having very good/excellent health and oral health and were less likely to experience barriers to care than Black CSHCN. Compositional differences on predictors explained 63%, 98%, and 80% of these gradients, respectively. Group variation in household income, family structure, neighborhood support, and exposure to adverse childhood experiences accounted for significant portions of the Black-white gaps in health and access. White CSHCN were also more likely to have very good/excellent health and oral health compared to Latino CSHCN. Differences on predictors accounted for about 86% and 80% of these gaps, respectively. Household income, adverse childhood experiences, and household language emerged as significant determinants of Latino-white disparities. CONCLUSIONS: Racial/ethnic health disparities among CSHCN are explained by relatively few determinants. Several of the contributing factors that emerged from the analysis and could be targeted by public health and policy interventions.

Perceived HIV Treatment Norms Modify the Association Between HIV-Related Stigma and Adherence to Antiretroviral Therapy Among Persons Living with HIV in Baltimore, Maryland.

Adherence to antiretroviral therapy (ART) is associated with reduced HIV-related morbidity/mortality and ongoing transmission; however, the extent to which this association is modified by perceived HIV treatment norms is unknown. 270 PLWH completed a survey to assess demographics, risk behaviors, stigma, ART adherence, and perceived HIV treatment norms (Baltimore, 2014-2017). We used modified Poisson regression to examine effect modification by perceived HIV treatment norms. The association between HIV-related stigma and ART adherence was modified by perceived HIV treatment norms. Among individuals who perceived that friends/family were sub-optimally adherent, HIV-related stigma was negatively associated with ART adherence (Adjusted Risk Ratio [ARR] = 0.36; 95%CI 0.15-0.87). Among those who perceived optimal adherence among friends/family, the relationship between HIV-related stigma and ART adherence was not statistically significant (ARR = 1.07; 95%CI 0.65-1.76). Interventions to improve ART adherence among those who are sub-optimally adherent could focus on increasing perceptions of ART adherence among their friends/family.

RESUMEN: La adherencia al tratamiento antirretroviral está asociada con la reducción de la morbilidad y mortalidad relacionada con el VIH y su transmisión; sin embargo, no se sabe hasta qué punto esta asociación se modificada por las normas percibidas sobre el tratamiento del VIH. 270 personas que viven con el VIH completaron una encuesta para evaluar las características demográficas, los comportamientos de riesgo, el estigma, la adherencia a los tratamientos antiretrovirales y las normas percibidas sobre el tratamiento del VIH (Baltimore, 2014­2017). Se utilizó una regresión de Poisson modificada para examinar la modificación del efecto por las normas percibidas sobre el tratamiento del VIH. La asociación entre el estigma relacionada con el VIH y la adherencia al tratamiento antirretroviral fue modificada por las normas percibidas de tratamiento del VIH. Entre los individuos que percibían que sus amigos/familiares no se adhirieron al tratamiento antirretroviral de manera óptima, el estigma relacionada con el VIH se asoció negativamente con la adherencia al tratamiento antirretroviral (Razón de riesgo ajustada [RRA] = 0.36; IC 95%:0.15­0.87). Entre los que percibían que sus amigos(as)/familiares se adhirieron al tratamiento del VIH de manera óptima, la asociación entre el estigma relacionada con el VIH y la adherencia al tratamiento antirretroviral no fue estadísticamente significativa (RRA = 1.07; IC 95%:0.65­1.76). Las intervenciones para mejorar la adherencia al tratamiento antirretroviral para aquellos que no se adhieren al tratamiento de manera óptima podrían centrarse en mejorar las normas percibidas sobre la adherencia al tratamiento antirretroviral entre sus amigos(as) y familiares.

Social network typology and health among parents of children with developmental disabilities: Results from a national study of midlife adults.

OBJECTIVE: There is increasing interest in the role of contextual factors in promoting well-being among parents of children with developmental disabilities. This study aimed to examine whether social network types moderate the impacts of having a child with a developmental disability on parents' health. METHODS: Using cross-sectional data from the Midlife in the United States survey (MIDUS 2 and Refresher cohorts), we analyzed a sample of 363 parents of children with developmental disabilities and 4,919 parents of children without developmental disabilities. K-means cluster analysis was implemented to identify a social network typology. Modified Poisson and negative binomial regression models estimated the effect of having a child with a developmental disability and the typology on parents' physical health (self-rated health, number of chronic conditions) and mental health (self-rated mental health, major depression). RESULTS: The cluster analysis revealed two social network types. Parents of children with developmental disabilities were more likely to have "restricted/unsupported" networks, whereas parents in the comparison group were more likely to have "diverse/supported" networks. Social support was more important for differentiating the network types of parents of children with developmental disabilities, while social integration was more salient for the comparison group. Parents of children with developmental disabilities fared worse on all outcomes relative to parents of children without disabilities. However, the typology had a compensatory psychological effect; the diverse/supported network type conferred greater mental health benefits to parents of children with developmental disabilities than to those in the comparison group. The diverse/supported network type was also associated with better physical health, but the associations did not differ between the two parent groups. CONCLUSIONS: The results of this study emphasize the importance of social determinants of well-being for those with exceptional parenting responsibilities. Strengthening social networks may have a particularly positive impact on such parents' mental health.

Symptom Sequelae Following Violence Against Youth With Disabilities.

The objective of this study was to examine the physical and mental health impact of violence against youth with and without disabilities. We analyzed data from the National Crime Victimization Survey (2008-2016), a nationally representative survey on crime in the United States. Respondents included 729 adolescents (12-17 years) and 953 young adults (18-24 years) who experienced violence in the previous 6 months. Disability status was determined using a six-item screener. Outcome measures included several physical and mental health symptoms experienced for at least one month following violence. Data were analyzed using multivariable logistic, Poisson, and negative binomial regression models. The results indicated that, for at least one month following a violent incident, adolescents and young adults with disabilities were more likely to experience headaches, sleep difficulty, changes in eating or drinking habits, fatigue, muscle pain, and severe distress compared to peers without disabilities. Young adults with disabilities were also more likely to experience stomach problems, depression, and anxiety. Adolescents and young adults with disabilities experienced a greater number of concurrent physical and mental health symptoms compared to peers without disabilities. The results suggest that the health effects of violence are worse for youth with disabilities compared to their nondisabled peers. These findings emphasize the importance of screening young people with disabilities for violence exposure and ensuring that trauma and health services are universally accessible.

Self-Injurious Behavior Among Adults With ASD: Hospitalizations, Length of Stay, and Costs of Resources to Deliver Care.

OBJECTIVE: Research on hospitalizations related to self-injurious behavior and ideation among adults with autism spectrum disorder (ASD) is limited. This study compared admissions, average length of stay, and costs of resources to deliver care for such hospitalizations between adults with and without ASD. METHODS: The 2014 Healthcare Cost and Utilization Project National Inpatient Sample was used to compare 5,341 discharge records for adults with ASD and 16,023 records for adults without ASD, matched on age and gender in a 1:3 ratio. Hierarchical logistic and linear regressions accounted for clustering by hospital. Covariates included gender, race-ethnicity, age, region, comorbidities, number of procedures, and insurance. RESULTS: Among hospitalized adults, those with ASD were twice as likely as those without ASD to have a hospitalization related to self-injurious behavior and ideation. Among hospital stays for self-injurious behavior and ideation, adults with ASD had average lengths of stay that were 2.14 days longer (95% confidence interval [CI]=1.20-3.08) compared with adults without ASD. Among adults with a hospitalization related to self-injurious behavior and ideation, unadjusted average costs for those with ASD were 36.8% higher than for adults without ASD. After the analysis accounted for covariates and length of stay, adults with ASD still had 7.48% (95% CI=1.05%-14.32%) higher costs. CONCLUSIONS: Adults with ASD were twice as likely as adults without ASD to have a hospitalization related to self-injurious behavior and ideation. Among adults with such a hospitalization, those with ASD had longer stays and, even after the analysis accounted for length of stay, higher costs.

Female Sterilization and Cognitive Disability in the United States, 2011-2015.

OBJECTIVE: To compare female sterilization among three mutually exclusive groups of females: 1) those without any self-reported disability, 2) those with noncognitive disabilities (sensory or physical disabilities), and 3) those with cognitive disabilities. METHODS: We conducted a secondary analysis of nationally representative data from the National Survey of Family Growth 2011-2015, which surveyed individuals aged 15-44 years in the U.S. civilian population. Disability status (self-reported) was ascertained using a standard set of questions about hearing, vision, cognitive, ambulatory, self-care, and independent living difficulties. Regression models were used to calculate odds of female sterilization, hysterectomies, and age of sterilization while accounting for sociodemographic differences. RESULTS: Female sterilization rates were higher among females with cognitive (22.1% [n=272]) and noncognitive disabilities (24.7% [n=150]) than among those without disabilities (14.8% [n=1,132]). After adjusting for sociodemographic covariates, females with cognitive disabilities had significantly higher odds of female sterilization (adjusted odds ratio [OR] 1.54, 95% CI 1.19-1.98, P<.01) and hysterectomy (adjusted OR 2.64, 95% CI 1.53-4.56, P<.001) than those without cognitive disabilities. Females with cognitive disabilities also underwent sterilization at significantly younger ages (27.3 years, 95% CI 27.0-27.6) than those with noncognitive disabilities (28.3 years, 95% CI 27.9-28.8) and those without any disability (29.8 years, 95% CI 29.5-30.0). CONCLUSION: U.S. females with cognitive disabilities were more likely to have undergone female sterilizations and hysterectomies and at younger ages than those with other disabilities or without disabilities. Drivers of these disability-related differences in female sterilization patterns must be explored.

The psychological consequences of violence against people with disabilities.

BACKGROUND: People with disabilities experience mental health disparities and higher rates of violence compared to people without disabilities. Few studies have examined the psychological consequences of violence against people with disabilities, and whether they differ from those experienced by people without disabilities. OBJECTIVE: This study compared psychological consequences of violence among men and women with and without disabilities. METHODS: We analyzed data from the 2008-2014 waves of the National Crime Victimization Survey. Multiple logistic regressions were estimated to compare the psychological impact of violent crime on respondents without disabilities to those with disabilities, who comprised roughly 20% of the sample (n = 8,070). We stratified by gender to compare the effects of violence experienced by men and women. RESULTS: Men with disabilities were more likely than men without disabilities to report severe distress (AOR = 2.07, p < 0.001), anxiety (1.79, p < 0.001), depression (2.32, p < 0.001), and anxiety and depression (2.34; p < 0.001), but were less likely to experience each outcome compared to women with disabilities. Men with disabilities had similar odds of adverse psychological outcomes compared to women without disabilities. Women with disabilities had higher odds of severe distress following violence compared to men without disabilities (3.90, p < 0.001) or women without disabilities (1.86, p < 0.001). Similarly, women with disabilities had higher odds of anxiety, depression, and anxiety and depression compared to men and women without disabilities. CONCLUSIONS: Women with disabilities are at higher risk of negative psychological consequences resulting from violence compared to other gender-disability groups. Men with disabilities also experience worse outcomes relative to men without disabilities.