Knowledge and beliefs about epilepsy genetics among Hispanic and non-Hispanic patients.

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.

Association of antiseizure medication adherence with illness perceptions in adults with epilepsy.

OBJECTIVE: We assessed the relationship of epilepsy illness perceptions to antiseizure medication (ASM) adherence. METHODS: Surveys were completed by 644 adult patients with epilepsy of unknown cause. We used the Morisky Medication Adherence Scale-8 (MMAS-8) to define "high" adherence (score = 8) and "low-medium" adherence (score < 8). We evaluated epilepsy illness perceptions using seven items from the Brief Illness Perception Questionnaire (BIPQ), each scored from 0-10, measuring participants' views of the overall effect of epilepsy on their lives, how long it would last, how much control they had over their epilepsy, the effectiveness of their treatment, level of concern about epilepsy, level of understanding of epilepsy, and emotional impact of epilepsy. We investigated the association of each BIPQ item with medication adherence using logistic regression models that controlled for potential confounders (age, race/ethnicity, income, and time since the last seizure). RESULTS: One hundred forty-nine patients (23%) gave responses indicating high adherence. In the adjusted models, for each 1-unit increase in participants' BIPQ item scores, the odds of high adherence increased by 17% for understanding of their epilepsy (OR = 1.17, 95% CI 1.07-1.27, p < 0.001), decreased by 11% for overall life impact of epilepsy (OR = 0.89, 95% CI 0.82-0.97, p = 0.01) and decreased by 6% for emotional impact of epilepsy (OR = 0.94, 95% CI 0.86-0.99, p = 0.03). No other illness perception was associated with high adherence. Depression, anxiety, and stigma mediated the inverse relationships of high adherence to the overall life impact of epilepsy and the emotional impact of epilepsy. These measures did not mediate the relationship of high adherence to the perceived understanding of epilepsy. CONCLUSION: These results indicate that a greater perceived understanding of epilepsy is independently associated with high ASM adherence. Programs aimed at improving patients' understanding of their epilepsy may help improve medication adherence.

Estimating lifetime risk for breast cancer as a screening tool for identifying those who would benefit from additional services among women utilizing mobile mammography.

BACKGROUND: To estimate lifetime risk of breast cancer among women utilizing mobile mammography and to determine the proportion that might benefit from additional services, such as genetic counseling and educational programs. METHODS: Retrospective analysis of electronic health records for 2214 women screened for breast cancer on a mobile mammography van was conducted. Participants answered questions about their demographic characteristics, breast health, and family history of cancer. Logistic regression analyses were used to assess the odds of being recommended for additional services by the Tyrer-Cuzick (TC) lifetime risk score. RESULTS: The average TC ten-year risk score was 2.76 % ± 2.01 %, and the average TC lifetime risk score was 7.30 % ± 4.80 %. Using lifetime risk scores ≥ 10 %, it was determined that 444 patients (20.23 %) could be referred to additional services. Less than one percent of patients had been tested for the BRCA genes previously. The odds of being recommended for additional services by the TC model were significantly greater among those who were eligible for the New York Cancer Services Program (i.e., a proxy for lack of insurance) when compared to those who were ineligible (OR=1.31, 95 % CI: 1.03-1.66). After adjustment, screening borough and race/ethnicity were not significantly associated with being recommended for services. CONCLUSION: Genetic counseling and education are some of the tools available to promote awareness and early detection of breast cancer; however, screening guidelines do not mandate genetic counseling or referrals for individuals at high-risk. POLICY SUMMARY: Patients and providers should have discussions about predicted TC lifetime risk scores at follow-up breast cancer screening appointments, as this is a missed opportunity to improve care at both fixed sites and mobile clinics.

Changes in General Health and Mental Health Outcomes in an Urban Population Over a Decade: A Population-Representative Analysis Stratified by Sexual Orientation.

Purpose: We explored population-level changes in general and mental health outcomes among sexual minority and heterosexual New York City (NYC) adults. Methods: Using the NYC Health and Nutrition Examination Surveys, we analyzed data from 2931 adults surveyed between 2004 and 2014. Sexual minority (LGB+) participants included those who identified as lesbian, gay, bisexual, something else, or not sure. Prevalence estimates of general health, mental health services use, prescription use for a mental/emotional condition, and mental/emotional disability were calculated. Changes in these estimates were compared across survey iterations with two-sided t-tests. Multivariate log binomial regression modeling was also employed. Results: Across the study period, LGB+ adults reported a decrease in fair/poor general health (24%-18%). Compared to 2004, LGB+ adults in 2014 were more likely to use mental health services (15%-27%), take prescription medication for a mental/emotional condition (11%-20%), and have a mental/emotional disability limiting work (5%-10%). Point estimates showed similar changes over time among both LGB+ and heterosexual adults, but some changes were not statistically significant. We also found that bisexual adults utilized mental health services (prevalence ratio [PR] = 2.15; 95% confidence interval [CI]: 1.34-3.44) and medications (PR = 2.92; 95% CI: 1.72-4.96) more than heterosexual adults. Conclusion: Although reporting fair/poor general health decreased, the prevalence of using mental health services, using prescription medication, and having a mental/emotional disability increased for both LGB+ and heterosexual adults in NYC. These findings may be related to greater mental health literacy and awareness or to other population-wide trends.

Reproduction and genetic causal attribution of epilepsy.

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.

Associations of Health Conditions and Health-Related Determinants with Disability among New York City Adult Residents.

Introduction: Population-based disability prevalence estimates are limited for New York City (NYC). We examined the association of several health and health-related measures with disability among NYC residents aged 20-64 years. Methods: We used information from 1,314 adults who participated in the 2013-2014 NYC Health and Nutrition Examination Survey (HANES). We categorized survey participants as having a disability if they reported a physical, mental, and/or emotional problem preventing work or if they reported difficulty walking without special equipment because of a health problem. We used log-binomial regression to quantify the association of each exposure with disability before and after adjustment for select covariates. Results: Overall, 12.4% of the study's NYC residents aged 20-64 years had a disability. After adjustment, disability prevalence was significantly greater among those who reported having unmet health care needs (prevalence ratio [PR] = 1.75, 95% CI: 1.18-2.57) and those who reported fair/poor general health (PR = 2.33, 95% CI: 1.68-3.24). The probability of disability was greater among NYC residents with arthritis (PR = 2.66, 95% CI: 1.85-3.98) and hypertension (PR = 1.48, 95% CI: 1.04-2.11) when compared with those without these conditions. Disability was also associated with depression (PR = 2.96, 95% CI: 2.06-4.25), anxiety (PR = 2.89, 95% CI: 2.15-3.88), and post-traumatic stress disorder (PR = 2.55, 95% CI: 1.66-3.91). Disability, however, was not associated with diabetes. Conclusion: Disability is more prevalent among those with unmet health care needs, fair/poor general health, arthritis, hypertension, depression, anxiety, and PTSD in these NYC residents, aged 20-64 years. These findings have implications for NYC's strategic planning initiatives, which can be better targeted to groups disproportionately affected by disability.

Validation study of the Parkinson's Fatigue Scale in advanced Parkinson's disease.

Purpose: To validate the Parkinson's Fatigue Scale (PFS-16) in advanced Parkinson Disease (APD) patients using the scale's Spanish version. Patients and methods: In a clinical study for Levodopa-Carbidopa Intestinal Gel (LCIG), 59 patients were assessed over six months using the PFS-16 and other instruments. The psychometric properties of the PFS-16 were then analyzed. Results: Patients (60.7% men) were aged 68.02±7.43 years. PD duration was 12.57±5.97 years. Median Hoehn and Yahr (HY) stage of patients in "on" was 2 (range: 1-4). There were excellent data quality and acceptability for the PFS-16 as a whole, except for moderate-to-high ceiling effects in its items. Two factors explained 67% of the variance, yet parallel analysis demonstrated the unidimensional nature of the PFS-16, whose internal consistency was satisfactory (Cronbach's alpha=0.93; item homogeneity coefficient=0.19, and item total-corrected correlations=0.50-0.84). PFS-16 total score showed moderate-to-high correlations with fatigue-specific questions within clinical tools, namely item 20 of the Beck Depression Inventory (rS=0.65) and item 4 of the Non-Motor Symptoms Scale (rS=0.33). Weak-to-moderate correlations were observed between the PFS-16 and measures of anxiety, depression, apathy, and quality of life. There were no significant differences in PFS-16 total scores when grouped by age, sex, time from diagnosis, HY, and CGI-S. After treatment with LCIG, the relative change in PFS-16 total score was -17.6% and the effect size (Cohen's d) was 0.92. Moderate correlations between changes in the PFS-16 and several other clinical tools were also found. Conclusion: In APD patients, the PFS-16 showed satisfactory acceptability, internal consistency, construct validity, and responsiveness.

The Parkinson's Disease Sleep Scale-2 (PDSS-2): Validation of the Spanish Version and Its Relationship With a Roommate-Based Version.

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.

Psychometric Properties of the Apathy Scale in Advanced Parkinson's Disease.

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 (r S = 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.

Relationship of Nocturnal Sleep Dysfunction and Pain Subtypes in Parkinson's Disease.

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.