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BackgroundSystemic sclerosis (SSc), or scleroderma, is a rare disease that often results in significant disruptions to activities of daily living and can negatively affect physical and psychological well-being. Because there is no known cure, SSc treatment focuses on reducing symptoms and disability and improving health-related quality of life (HRQoL). Self-management programs are known to increase self-efficacy for disease management in many chronic diseases. The Scleroderma Patient-centered Intervention Network (SPIN) developed a Web-based self-management program (SPIN self-management; SPIN-SELF) to increase self-efficacy for disease management and to improve HRQoL for patients with SSc. ObjectiveThe proposed study aims to assess the feasibility of conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF program by evaluating the trial implementation processes, required resources and management, scientific aspects, and participant acceptability and usage of the SPIN-SELF program. MethodsThe SPIN-SELF feasibility trial will be conducted via the SPIN Cohort. The SPIN Cohort was developed as a framework for embedded pragmatic trials using the cohort multiple RCT design. In total, 40 English-speaking SPIN Cohort participants with low disease management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale score ≤7), who have indicated interest in using a Web-based self-management program, will be randomized with a 3:2 ratio into the SPIN-SELF program or usual care for 3 months. Feasibility outcomes include trial implementation processes, required resources and management, scientific aspects, and patient acceptability and usage of the SPIN-SELF program. ResultsEnrollment of the 40 participants occurred between July 5, 2019, and July 27, 2019. By November 25, 2019, data collection of trial outcomes was completed. Data analysis is underway, and results are expected to be published in 2020. ConclusionsThe SPIN-SELF program is a self-help tool that may improve disease-management self-efficacy and improve HRQoL in patients with SSc. The SPIN-SELF feasibility trial will ensure that trial methodology is robust, feasible, and consistent with trial participant expectations. The results will guide adjustments that need to be implemented before undertaking a full-scale RCT of the SPIN-SELF program. International Registered Report Identifier (IRRID)DERR1-10.2196/16799

Black and Latino adult cancer patients are underrepresented in cancer clinical trials, which limits generalizability of findings and amplifies disparities in healthcare access and outcomes. Community-level education programs designed to address barriers to participation could improve representation in cancer clinical trials. Through a community-campus partner framework, this study evaluated the Women United: Clinical Trials and the Fight Against Breast Cancer Program in Spanish and English. Participants were 422 women (141 Black, 140 Latina Spanish preference, 141 Latina English preference) who were randomized to view either the intervention (n = 215) or a control (n = 207) program. Assessments of clinical trials knowledge and barriers to clinical trials participation were taken before and after viewing. Results suggested that clinical trials knowledge increased and perceived barriers to participation decreased for those who viewed the educational program. More specifically, those in the intervention condition perceived fewer barriers related to personal benefits, mistrust, and familiarity of clinical trials. As expected, there were no differences in perceived barriers related to community support for either condition. Participants in both conditions were equally likely to join a subsequent study or a clinical trials community ambassador program. There were no differences in any of the outcomes across ethnicity or language, suggesting the program works equivalently across groups. This program is easy to administer and can be recommended for use among Black and Latina women to address factors related to clinical trials participation.

The English and Spanish versions of the Multidimensional Health Locus of Control scales have not been psychometrically evaluated for use with Hispanic Americans. Hispanic American adults (N = 436) completed the English (n = 210) or Spanish (n = 226) Multidimensional Health Locus of Control scales. A multiple-group confirmatory factor analysis did not support equivalent four-factor structures for Spanish- and English-speaking Hispanic Americans. Follow-up exploratory factor analyses of the 24 items supported an 18-item, four-factor structure for English-speaking Hispanic Americans and a 22-item, three-factor structure for Spanish-speaking Hispanic Americans. These results suggest caution when using the Multidimensional Health Locus of Control scales with Hispanic Americans.

ObjectiveThe utility of informant-based measures of cognitive decline to accurately describe objective cognitive performance in Parkinson's disease (PD) without dementia is uncertain. Due to the clinical relevance of this information, the purpose of this study was to examine the relationship between informant-based reports of patient cognitive decline via the Informant Questionnaire of Cognitive Decline in the Elderly (IQCODE) and objective cognition in non-demented PD controlling for cognitive status (i.e., mild cognitive impairment; PD-MCI and normal cognition; PD-NC).MethodOne-hundred and thirty-nine non-demented PD participants (PD-MCI n = 38; PD-NC n = 101) were administered measures of language, executive function, attention, learning, delayed recall, visuospatial function, mood, and motor function. Each participant identified an informant to complete the IQCODE and a mood questionnaire.ResultsGreater levels of informant-based responses of patient cognitive decline on the IQCODE were significantly associated with worse objective performance on measures of global cognition, attention, learning, delayed recall, and executive function in the overall sample, above and beyond covariates and cognitive status. However, the IQCODE was not significantly associated with language or visuospatial function.ConclusionsResults indicate that informant responses, as measured by the IQCODE, may provide adequate information on a wide range of cognitive abilities in non-demented PD, including those with MCI and normal cognition. Findings have important clinical implications for the utility of the IQCODE in the identification of PD patients in need of further evaluation, monitoring, and treatment.

PurposeSleep disturbance and cancer-related fatigue (CRF) are among the most commonly reported symptoms associated with breast cancer and its treatment. This study identified symptom cluster groups of breast cancer patients based on multidimensional assessment of sleep disturbance and CRF prior to and during chemotherapy.MethodsParticipants were 152 women with stage I-IIIA breast cancer. Data were collected before chemotherapy (T1) and during the final week of the fourth chemotherapy cycle (T2). Latent profile analysis was used to derive groups of patients at each timepoint who scored similarly on percent of the day/night asleep per actigraphy, the Pittsburgh Sleep Quality Index global score, and the five subscales of the Multidimensional Fatigue Symptom Inventory-Short Form. Bivariate logistic regression evaluated if sociodemographic/medical characteristics at T1 were associated with group membership at each timepoint.ResultsThree groups (Fatigued with sleep complaints, Average, Minimal symptoms) were identified at T1, and five groups (Severely fatigued with poor sleep, Emotionally fatigued with average sleep, Physically fatigued with average sleep, Average, Minimal symptoms) at T2. The majority of individuals in a group characterized by more severe symptoms at T1 were also in a more severe symptom group at T2. Sociodemographic/medical variables at T1 were significantly associated with group membership at T1 and T2.ConclusionsThis study identified groups of breast cancer patients with differentially severe sleep disturbance and CRF symptom profiles prior to and during chemotherapy. Identifying groups with different symptom management needs and distinguishing groups by baseline sociodemographic/medical variables can identify patients at risk for greater symptom burden.

ObjectiveImprovement in health-related quality of life (HRQoL) is a public health goal of Healthy People 2020. Hispanics living in the United States are at risk for poor HRQoL, but the causes and correlates of this risk are not well understood. Thus, the present study examined individual-level psychosocial and neighborhood-level built environment correlates of physical and mental HRQoL among Hispanic adults.MethodA community sample of Hispanic adults (N = 383) completed self-report health-related questionnaires, and census tract was used to collect data on neighborhood-level built environment variables. Multilevel modeling was used to examine individual-level psychosocial (language preference, religiosity, subjective social status, discrimination, and number of years lived in the United States) and neighborhood-level built-environment (the retail food environment, proximity to alcohol retailers, and tobacco retailer density) correlates of physical and mental HRQoL.ResultsHigher subjective social status was significantly associated with better HRQoL, and more experiences with discrimination were significantly associated with lower HRQoL. For physical HRQoL, these relationships were stronger in neighborhoods with a higher density of tobacco retail outlets.ConclusionsFindings from this study suggest that subjective social status and discrimination play important roles in HRQoL among Hispanics, in particular in neighborhoods with a higher density of tobacco retail outlets. This study highlights the importance of considering neighborhood context, and in particular neighborhood disadvantage, when examining the relationship between social status, discrimination and HRQoL among Hispanics. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

This study examined the psychometric properties of the Perceived Stress Scale-10 among 436 community-dwelling Hispanic Americans with English or Spanish language preference. Multigroup confirmatory factor analysis examined the factorial invariance of the Perceived Stress Scale-10 across language groups. Results supported a two-factor model (negative, positive) with equivalent response patterns and item intercepts but different factor covariances across languages. Internal consistency reliability of the Perceived Stress Scale-10 total and subscale scores was good in both language groups. Convergent validity was supported by expected relationships of Perceived Stress Scale-10 scores to measures of anxiety and depression. These results support the use of the Perceived Stress Scale-10 among Hispanic Americans.

ObjectiveProstate cancer can have a significant negative impact on patients and their spouses. Problem-solving therapy (PST) has been shown to help reduce distress and improve quality of life among cancer and caregiver populations. This study tested the efficacy of PST for spouses of men with prostate cancer.MethodsSpouses of men diagnosed with prostate cancer within the past 18 months (N = 164) were randomly assigned to PST (n = 78) or usual psychosocial care (UPC; n = 86). Spouses completed measures of constructive and dysfunctional problem solving, cancer-related distress, mood, physical and mental health, and dyadic adjustment at preintervention and post-intervention and 3-month post-intervention follow-up.ResultsConstructive problem solving increased from pre-intervention to post-intervention among spouses receiving PST but not for spouses receiving UPC; this was maintained at follow-up. There was no decrease in dysfunctional problem solving. Spouses receiving PST versus UPC reported less cancer-related distress post-intervention and at follow-up. There were no significant changes in mood or physical and mental health. Dyadic adjustment was significantly better for spouses receiving PST versus UPC at post-intervention but not at follow-up. Improvements in constructive problem solving mediated better mood and dyadic adjustment post-intervention.ConclusionsResults support the efficacy of PST for improving spouses' constructive problem solving. There was evidence of both direct and mediated positive effects of PST for both individual and dyadic adjustment. PST may be useful for improving individual and dyadic outcomes for spouses of men with prostate cancer.

Preschool children develop early literacy skills (ELS) needed for reading acquisition. Screening for delayed ELS could trigger interventions to prevent reading problems.To develop a brief screening test for ELS delays, the Early Literacy Skills Assessment Tool (ELSAT).This study included 4-year-old, typically developing, English language-predominant children attending preschool. The ELSAT comprised 63 items relating to 3 main ELS domains and was piloted with 21 children. After we excluded items that were nondiscriminatory, 57 items remained and were administered to 96 children. Items were compared with reference measures of ELS (Get Ready to Read-Revised), and language (Peabody Picture Vocabulary Test-4 and Phonological Awareness from the Comprehensive Test of Phonological Processing-2). Within-domain reliability was calculated for each of the 3 ELS domains and item correlations between all ELSAT items and the reference measures were calculated.A final set of 10 items was retained that represented all 3 ELS domains and that maximized correlations with reference measures. Cronbach alpha for the refined 10-item ELSAT was 0.868; correlations between individual items and a composite of the reference measures ranged from 0.409 to 0.617 (all Ps < .01). In a receiver operating characteristic curve analysis, a cut-off score of ≤5 predicted a below-average score for any of the reference measures with sensitivity of 90%, specificity of 71.4%, and area under the curve of 0.872.The 10-item ELSAT shows strong psychometric properties and with further validation may prove valuable in screening preschool children for ELS delays.

The Life Orientation Test-Revised (LOT-R) is a widely used measure of optimism and pessimism, with three positively worded and three negatively worded content items. This study examined the structural validity and invariance, internal consistency reliability, and convergent and divergent validity of the English and Spanish versions of the LOT-R among Hispanic Americans. A community sample of Hispanic Americans (N = 422) completed self-report measures, including the LOT-R, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7, in their preferred language of English or Spanish. Based on the literature, four structural models were tested: one-factor, oblique two-factor, orthogonal two-factor method effects with positive specific factor, and orthogonal two-factor method effects with negative specific factor. Baseline support for both of the English and Spanish versions was not achieved for any model; in all models, the negatively worded items in Spanish had non-significant factor loadings. Therefore, the positively worded three-item optimism subscale of the LOT-R was examined separately and fit the data, with factor loadings equivalent across language-preference groups. Coefficient alphas for the optimism subscale were consistent across both language-preference groups (αs = .61 [English] and .66 [Spanish]). In contrast, the six-item total score and three-item pessimism subscale demonstrated extremely low or inconsistent alphas. Convergent and divergent validity were established for the optimism subscale in both languages. In sum, the optimism subscale of the LOT-R demonstrated minimally acceptable to good psychometric properties across English and Spanish language-preference groups. However, neither the total score nor the pessimism subscale showed adequate psychometric properties for Spanish-speaking Hispanic Americans, likely due to translation and cultural adaptation issues, and thus are not supported for use with this population.

BackgroundVisual Hallucinations (VH) are a common symptom experienced by individuals with Parkinson's disease (PD); however, a validated measure of VH has yet to be established for this population. The North-East Visual Hallucinations Interview (NEVHI), a promising VH measure, has not been well validated in PD. The aim of this study was to evaluate the convergent and discriminant validity of the NEVHI as well as the proportional identification and characteristics of VH in PD.MethodsOne hundred seventeen individuals with PD completed the NEVHI as well as evaluations of psychological, cognitive, motor, and visual functioning as measures of convergent and divergent validity. The hallucination items from the Neuropsychiatric Inventory (NPI) and the Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Scale (MDS-UPDRS) were used to assess convergent validity.ResultsThe NEVHI identified 20.5% of PD patients with VH, which consisted of all individuals detected by the MDS-UPDRS and NPI and nine additional individuals not detected by the other measures. The NEVHI was strongly correlated with the MDS-UPDRS hallucinations item, and weakly correlated with the NPI VH item. Weak to non-significant correlations were found between the NEVHI and measures of psychological, cognitive, motor, visual, and demographic characteristics.DiscussionThe NEVHI identified a greater number of individuals with VH than either the MDS-UPDRS or NPI. Results demonstrated good convergent validity between the NEVHI and a clinician-administered-to-patient-report measure of VH and excellent divergent validity, supporting the NEVHI as a valid and preferable measure for assessing the presence of VH in PD.

Objective: Systemic sclerosis (SSc) is a rare, chronic autoimmune disorder associated with disability, diminished physical function, fatigue, pain, and mental health concerns. We assessed minimal detectable changes (MDCs) of the Health Assessment Questionnaire–Disability Index (HAQ‐DI), Patient‐Reported Outcomes Measurement Information System‐29 Profile version 2.0 (PROMIS‐29v2.0) domains, and Patient Health Questionnaire (PHQ)‐8 in people with SSc. Methods: Scleroderma Patient‐Centered Intervention Network Cohort participants completed the HAQ‐DI, PROMIS‐29v2.0 domains, and PHQ‐8 at baseline assessments from April 2014 until August 2023. We estimated MDC95 (smallest change that can be detected with 95% certainty) and MDC90 (smallest change that can be detected with 90% certainty) with 95% confidence intervals (CIs) generated via the percentile bootstrapping method resampling 1,000 times. We compared MDC estimates by age, sex, and SSc subtype. Results: A total of 2,571 participants were included. Most were female (n = 2,241; 87%), and 38% (n = 976) had diffuse SSc. Mean (±SD) age was 54.9 (±12.7) years and duration since onset of first non‐Raynaud phenomenon symptom was 10.8 (±8.7) years. MDC95 estimate was 0.41 points (95% CI 0.40–0.42) for the HAQ‐DI, between 4.88 points (95% CI 4.72–5.05) and 9.02 points (95% CI 8.80–9.23) for the seven PROMIS‐29v2.0 domains, and 5.16 points (95% CI 5.06–5.26) for the PHQ‐8. MDC95 estimates were not materially different across subgroups. Conclusion: MDC95 and MDC90 estimates were precise and similar across age, sex, and SSc subtype groups. HAQ‐DI MDC95 and MDC90 were substantially larger than previous estimates of HAQ‐DI minimal important difference from several small studies. Minimally important differences of all measures should be evaluated in large studies using anchor‐based methods. [ABSTRACT FROM AUTHOR]

Objectives To compare physical function in systemic sclerosis (SSc, scleroderma) to general population normative data and identify associated factors. Methods Scleroderma Patient-centered Intervention Network Cohort participants completed the Physical Function domain of the Patient-Reported Outcomes Measurement Information System Version 2 upon enrolment. Multivariable linear regression was used to assess associations of sociodemographic, lifestyle, and disease-related variables. Results Among 2385 participants, the mean physical function T-score (43.7, SD = 8.9) was ∼2/3 of a standard deviation (SD) below the US general population (mean = 50, SD = 10). Factors associated in the multivariable analysis included older age (−0.74 points per SD years, 95% CI −0.78 to −1.08), female sex (−1.35, −2.37 to −0.34), fewer years of education (−0.41 points per SD in years, −0.75 to −0.07), being single, divorced, or widowed (−0.76, −1.48 to −0.03), smoking (−3.14, −4.42 to −1.85), alcohol consumption (0.79 points per SD drinks per week, 0.45–1.14), BMI (−1.41 points per SD, −1.75 to −1.07), diffuse subtype (−1.43, −2.23 to −0.62), gastrointestinal involvement (−2.58, −3.53 to −1.62), digital ulcers (−1.96, −2.94 to −0.98), moderate (−1.94, −2.94 to −0.93) and severe (−1.76, −3.24 to −0.28) small joint contractures, moderate (−2.10, −3.44 to −0.76) and severe (−2.54, −4.64 to −0.44) large joint contractures, interstitial lung disease (−1.52, −2.27 to −0.77), pulmonary arterial hypertension (−3.72, −4.91 to −2.52), rheumatoid arthritis (−2.10, −3.64 to −0.56) and idiopathic inflammatory myositis (−2.10, −3.63 to −0.56). Conclusion Physical function is impaired for many individuals with SSc and is associated with multiple disease factors. [ABSTRACT FROM AUTHOR]

Objective: The Craniofacial Condition Quality of Life Scale (CFC-QoL) was used to evaluate the relationship between surgical burden and quality of life (QoL) Design: Patient-parent dyads completed the CFC-QoL which queries the following QoL domains: Bullying, Peer Problems, Psychological Impact, Family Support, Appearance Satisfaction, and Desire for Appearance Change. Stepwise multivariate linear regressions were performed for each QoL domain. Setting: Urban tertiary care center Patients, participants: Pediatric patients with facial differences, and their parents. Intervention: Survey study Main Outcome Measure(s): Demographic, diagnostic, and surgical characteristics were collected. Surgical burden was calculated as the standard deviation from the mean number of surgeries per diagnostic cohort. Result: Patients (N = 168) were majority female (57.1%) and Hispanic (64.3%). Diagnoses were cleft lip and/or palate (CLP, n = 99) or other craniofacial conditions (CFC, n = 69). Average patient age was 2.3 ± 5.6 years at first reconstructive surgery and 12.3 ± 3.4 years at study enrollment. Patients received an average of 4.3 ± 4.1 reconstructive surgeries. Worse Bullying was associated with higher surgical burden. Worse Peer Problems was associated with higher surgical burden, but only for children with non-CLP CFCs. Worse Family Support was associated with CFC diagnosis, female sex, and higher surgical burden. Worse Psychological Impact was associated with higher surgical burden. Worse Appearance Satisfaction was associated with younger age and with lower surgical burden. Greater Desire for Appearance Change was associated with older age, higher surgical burden, CLP diagnosis, female sex, and non-Hispanic ethnicity. Socioeconomic status did not predict QoL per patient self- or parent-proxy report. Conclusions: Higher surgical burden was associated with worse QoL outcomes in multiple domains. [ABSTRACT FROM AUTHOR]

PurposeWe compared adoption consideration between female young adult cancer survivors and women of the same age in the general US population, hypothesizing that cancer survivors who desired children would report greater interest in adoption than an age-adjusted general population sample who desired children.MethodsAfter age-standardizing the cancer survivor cohort to match the age distribution of the 2006-2010 National Survey for Family Growth (NSFG), we estimated adoption consideration among women age 18-35 years who wanted a (another) child in the two cohorts overall and within age groups. We assessed characteristics and concerns related to adoption consideration among cancer survivors.ResultsAmong cancer survivors, 81.6 % (95 % CI 75.7-87.6) reported that they would consider adoption compared to 40.3 % (95 % CI 40.3-40.3) of women in the general population. While over 80 % of the cancer survivor sample reported that they would consider adoption, only 15 % of cancer survivors reported no concerns about adoption. The most common concerns were desire for a biological child (48 %), expense (45 %), adoption agency candidacy (41 %), and needing more information (39 %).ConclusionWe observed a twofold higher interest in adoption when comparing the cancer survivor with the general population, suggesting that adoption is a consideration for many young women who have survived cancer.Implications for cancer survivorsAdoption is an important family-building option for those who want to have a child but are unable to or choose not to have a biological child. However, young adult survivors may need more support to understand and navigate this process.

Latent profile analysis identified health locus of control profiles among 436 Hispanic Americans who completed the Multidimensional Health Locus of Control scales. Results revealed four profiles: Internally Oriented-Weak, -Moderate, -Strong, and Externally Oriented. The profile groups were compared on sociocultural and demographic characteristics, health beliefs and behaviors, and physical and mental health outcomes. The Internally Oriented-Strong group had less cancer fatalism, religiosity, and equity health attributions, and more alcohol consumption than the other three groups; the Externally Oriented group had stronger equity health attributions and less alcohol consumption. Deriving multidimensional health locus of control profiles through latent profile analysis allows examination of the relationships of health locus of control subtypes to health variables.

IntroductionExcessive daytime sleepiness (EDS) has been shown to be associated with depression; however, this relationship has not been confirmed among Hispanic Americans.MethodThis study examined the link between EDS and depression among Hispanic Americans (N = 411) and explored the potential moderating roles of age, gender, income, education, health status, and acculturation. The Epworth Sleepiness Scale and Patient Health Questionnaire-9 measured EDS and depression, respectively.ResultsHierarchical linear regression demonstrated that EDS was significantly related to depression. Receiver operating characteristic curve analysis suggested that the Epworth Sleepiness Scale discriminated with adequate sensitivity and specificity between participants with moderately severe depression and those with less severe symptoms. No sociodemographic variables moderated the EDS-depression relationship.ConclusionThese findings suggest that depression should be considered when Hispanic Americans present with EDS.

The pilot study reported in this article culturally and linguistically adapted an educational intervention to promote cancer clinical trials (CCTs) participation among Latinas/os and African Americans. The single-session slide presentation with embedded videos, originally developed through a campus-community partnership in Southern California, was chosen for adaptation because it was perceived to fit the CORRECT model of innovation (credible, observable, relevant, relatively advantageous, easy to understand, compatible, and testable) and because of the potential to customize any components not identified as core, allowing them to be revised for cultural and linguistic alignment in New York City. Most of the 143 community participants (76.2%) were female; most (54.6%) were older than 59 years. More than half (78.3%) preferred to speak English or were bilingual in English and Spanish. A large proportion (41.3%) had not completed high school. Knowledge and perceived benefits and barriers regarding CCT showed small, though statistically significant, increases. There were no statistically significant group differences for changes in mean knowledge, perceived benefits, or perceived barriers when examined by ethnicity, education level, language, or other included sociodemographic variables. However, a small, but statistically significant difference in perceived barriers was observed when examined by country of origin, with the foreign born score worsening 0.08 points (SD = 0.47, p = .007) on the 5-point Likert-type scale administered posteducation compared to preeducation. Participants' open-ended comments demonstrated the acceptability of the topic and intervention. This adaptation resulted in an intervention with the potential to educate African American and Latina/o general community members in a new geographic region about the purpose, methods, and benefits of CCTs.

The present study evaluated the psychometric properties of the Patient Health Questionnaire-4 (PHQ-4), a screener of psychological distress, in English- and Spanish-speaking Hispanic Americans. Hispanic American adults (N = 436) completed the PHQ-4, which yields two subscales (anxiety and depression) that can be summed to create a total score. Multiple-group confirmatory factor analysis was used to evaluate structural validity. The two-factor structure was the best fit to the data for both English- and Spanish-speaking Hispanic Americans and items loaded equivalently across groups, demonstrating measurement invariance. Internal consistency reliability was good as measured by coefficient alpha. Construct validity was evidenced by significant expected relationships with perceived stress. These findings provide support for the reliability and validity of the PHQ-4 as a brief measure of psychological distress for English- or Spanish-speaking Hispanic Americans.

ObjectiveChanges in appearance are common in patients with systemic sclerosis (SSc) and can significantly affect well-being. The Satisfaction with Appearance Scale (SWAP) measures body image dissatisfaction in persons with visible disfigurement; the Brief-Satisfaction with Appearance Scale (Brief-SWAP) is its short form. The present study evaluated the reliability and validity of SWAP and Brief-SWAP scores in SSc.MethodsA sample of 207 patients with SSc participating in the University of California, Los Angeles Scleroderma Quality of Life Study completed the SWAP. Brief-SWAP scores were derived from the SWAP. The structural validity of both measures was investigated using confirmatory factor analysis. Internal consistency reliability of total and subscale scores was assessed with Cronbach's alpha coefficients. Convergent and divergent validity was evaluated using the Center for Epidemiological Studies Depression Scale, the Health Assessment Questionnaire-Disability Index, and the Medical Outcomes Study Short Form-36 questionnaire.ResultsSWAP and Brief-SWAP total scores were highly correlated (r = 0.97). The 4-factor structure of the SWAP fit well descriptively; the 2-factor structure of the Brief-SWAP fit well descriptively and statistically. Internal consistencies for total and subscale scores were good, and results supported convergent and divergent validity.ConclusionBoth versions are suitable for use in patients with SSc. The Brief-SWAP is most efficient; the full SWAP yields additional subscales that may be informative in understanding body image issues in patients with SSc.

BackgroundAlthough fear of falling is prevalent among older adults recovering from hip fracture, current instruments are inadequate due to focus on specific situations and measurement of self-efficacy rather than fear.MethodsThe authors revised and tested a form of the Fear of Falling Questionnaire with three groups of older adults: 405 recovering from hip fracture, 89 healthy community dwelling, and 42 with severe fear of falling. Test-retest reliability was evaluated in a subsample of 16 hip fracture patients. Internal consistency was compared across all groups. Construct validity was established through factor analysis, convergent validity with a measure of fall-related self-efficacy, and discriminant validity with measures of depression and affect.ResultsA revised two-factor, six-item scale appears to have adequate psychometric properties. Scores were lower in the healthy comparison group relative to the hip fracture and fear of falling groups. Cronbach's α ranged from 0.72-0.83, with test-retest reliability of 0.82. Correlations with a measure of fall-related self-efficacy were moderate for the hip fracture group (0.42) and high with the healthy comparison (0.68) and fear of falling (0.70) groups. Correlations with depression and negative and positive affect were low to moderate.ConclusionsThe Fear of Falling Questionnaire - Revised shows promise as a self-report measure of fear of falling, and is one of the first to be tested in older adults recovering from hip fracture. Advantages are that it is global rather than situation-specific and measures fear rather than self-efficacy. Future research on this scale is recommended in other older adult samples for whom fear of falling is relevant.

BackgroundYoung adult female cancer survivors have unmet reproductive concerns and informational needs that are associated with poorer quality of life. The purpose of this study was to examine the association between current reproductive concerns and moderate to severe depression among young survivors.MethodsThis cross-sectional study included 200 female cancer survivors between the ages of 18 and 35 years who completed a Web-based survey measuring reproductive history, parenthood desires, reproductive concerns after cancer, and quality-of-life indicators.ResultsThe mean age of the participants was 28 years (standard deviation, 4.4 years), and almost two-thirds were diagnosed within 5 years of survey completion. A multivariate logistic regression analysis controlling for education, duration of survivorship, and social support revealed an association between experiencing reproductive concerns and moderate to severe depression (odds ratio for each 5-unit increase in the Reproductive Concerns After Cancer [RCAC] score, 1.30; 95% confidence interval, 1.06-1.60). Among those with moderate to severe depression, 23% had high RCAC scores, whereas 6% of those with minimal to mild depression did (P

This study evaluated the associations among perceived risk, perceived efficacy, and engagement in six cancer-related risk behaviors in a population-based Hispanic/Latino sample. Interviews were conducted with 5,313 Hispanic/Latino adults as part of the Hispanic Community Health Study/Study of Latinos (HCHS/SOL) Sociocultural Ancillary Study. Participants were recruited from the study's four field centers (Bronx, NY; Chicago, IL; Miami, FL; San Diego, CA) between February 2010 and June 2011. Perceived risk and perceived efficacy were assessed with questions drawn from the Health Interview National Trends Survey. More than half of the sample endorsed perceived risk of cancer associated with the six evaluated behaviors, as well as general perceived efficacy for preventing cancer. Adjusted logistic regression analyses demonstrated significant differences across Hispanic/Latino background groups for perceived risk associated with high consumption of alcohol and saturated fat, low consumption of fruits and vegetables, and insufficient exercise but not with smoking or low consumption of fiber. Differences were also found for the belief, "It seems like everything causes cancer" but not for other perceived efficacy items. Perceived cancer risk and perceived efficacy for preventing cancer were neither independently nor interactively associated with engagement in cancer-related risk behaviors after controlling for sociodemographic covariates. Results suggest that perceptions of risk and efficacy with regard to cancer vary across Hispanic/Latino background groups, and therefore background group differences should be considered in prevention efforts. Perceived risk and perceived efficacy were not related to cancer-related risk behaviors among Hispanics/Latinos. Further work is needed to evaluate determinants of cancer-related risk in this population. [The following Institutes/Centers/Offices contribute to the Hispanic Community Health Study/Study of Latinos through a transfer of funds to the NHLBI: National Center on Minority Health and Health Disparities, the National Institute of Deafness and Other Communications Disorders, the National Institute of Dental and Craniofacial Research, the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Neurological Disorders and Stroke, and the Office of Dietary Supplements.]

ObjectivesThis study examined the psychometric properties of the Multidimensional Fatigue Symptom Inventory-Short Form (MFSI-SF) in a community-based sample of African-Americans.DesignA sample of 340 African-Americans (116 men, 224 women) ranging in age from 18-81 years were recruited from the community (e.g., churches, health fairs, and beauty salons). Participants completed a brief demographic survey, the MFSI-SF and the Positive and Negative Affect Schedule.ResultsThe structural validity of the MFSI-SF for a community-based sample of African-Americans was not supported. The five dimensions of fatigue (General, Emotional, Physical, Mental, Vigor) found for Whites in prior research were not found for African-Americans in this study. Instead, fatigue, while multidimensional for African-Americans, was best represented by a unique four-four profile in which general and emotional fatigue are collapsed into a single dimension and physical fatigue, mental fatigue, and vigor are relatively distinct. Hence, in the absence of modifications, the MFSI-SF cannot be considered to be structurally invariant across ethnic groups. A modified four-factor version of the MFSI-SF exhibited excellent internal consistency reliability and evidence supports its convergent validity. Using the modified four-factor version, gender, and age were not meaningfully associated with MFSI-SF scores.ConclusionFuture research should further examine whether modifications to the MFSI-SF would, as the findings suggest, improve its validity as a measure of multidimensional fatigue in African-Americans.

Abstract The purpose of this study was to educate Latino and African American urban populations about cancer clinical trials. Compared to whites, both African Americans and Latinos tend to have lower access to cancer treatment and to be diagnosed at advanced stages, trends associated with increased mortality and more difficult treatments. Clinical trials offer the possibility of developing improved treatments and participants may access treatments before they are widely available. Yet, while overall 3-5% of cancer patients participate in clinical trials, a lower proportion of ethnic minorities participate, resulting in limited generalizability of outcome data on the effectiveness of interventions to prevent and control cancer among underrepresented groups, and less access to newer treatments. Previous research has identified barriers to minority participation in clinical research related to scientific literacy (including fear of mistreatment), language, and civic literacy (lack of trust in biomedical systems). This paper describes the adaptation of a community-based cancer clinical trials educational program from the West Coast of the United States to the East Coast. Researchers and program staff from the two sites worked closely together to share materials, including the pre- and post-program questionnaires and the curriculum formatted in PowerPoint. The program curriculum was revised to be consistent with contextual factors, in order to be culturally competent in the adapting region, as follows. Minority cancer clinical trial participants who were representative of local populations were invited to participate in videotaped interviews about their research experiences. Taped segments of local interview subjects were integrated into the presentation, and segments featuring West Coast research participants were removed. The Spanish language in the curriculum was revised to match regional usage of Latino groups dominant in the East Coast region, while attempting to maintain fidelity with the original meaning. Community outreach, program delivery, and data collection methods were revised to be compatible with the capacity of the adapting site, including revising the measures to match Spanish-language changes made in the curriculum and shifting from written questionnaires to Audience Response electronic technology. Every possible effort was made to otherwise maintain fidelity during implementation and measurement. In the data analysis phase, the research staff is sharing syntax for variable recoding and creation, and will discuss and compare findings across both sites. To test the feasibility of the adaptation, a recruitment goal of 120 participants (40 African Americans, 40 English-speaking Latinos, and 40 Spanish speaking Latinos) was planned. To meet our recruitment goals, over all, 143 people attended our replication programs. To measure participant responsiveness, participants were asked to provide open-ended written comments. The vast majority expressed satisfaction with the presentation. The main themes identified from their comments were that the program was interesting, important, and useful, and that they learned something new. Negative feedback regarding the presentation was minor and related to technical difficulties which prolonged the meetings. We discuss the procedures and lessons learned during the adaptation and feasibility testing of this intervention. This study demonstrates that adaptation of a cancer clinical trials education program from one geographic region to another is feasible, and that the process and the initiative benefit from the sharing of materials between multiple sites. These data contribute to the growing literature on dissemination and implementation research in cancer control and prevention. Citation Format: Debra J. Pelto, Georgia Robins Sadler, Ogo Njoku, Maria Carina Rodriguez, Alma Behar, Vanessa L. Malcarne, Lina Jandorf. Adaptation of a cancer clinical trials educational program for African Americans and Latinos. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A56. doi:10.1158/1538-7755.DISP13-A56

Latinas are more likely to exhibit late stage breast cancers at the time of diagnosis and have lower survival rates compared to white women. A contributing factor may be that Latinas have lower rates of mammography screening. This study was guided by the Behavioral Model of Health Services Use to examine factors associated with mammography screening utilization among middle-aged Latinas. An academic-community health center partnership collected data from community-based sample of 208 Latinas 40 years and older in the San Diego County who completed measures assessing psychosocial factors, health care access, and recent mammography screening. Results showed that 84.6 % had ever had a mammogram and 76.2 % of women had received a mammogram in the past 2 years. Characteristics associated with mammography screening adherence included a lower acculturation (OR 3.663) a recent physician visit in the past year (OR 6.304), and a greater confidence in filling out medical forms (OR 1.743), adjusting for covariates. Results demonstrate that an annual physical examination was the strongest predictor of recent breast cancer screening. Findings suggest that in this community, improving access to care among English-speaking Latinas and addressing health literacy issues are essential for promoting breast cancer screening utilization.

The Generalized Anxiety Disorder-7 scale (GAD-7) is a self-report questionnaire that is widely used to screen for anxiety. The GAD-7 has been translated into numerous languages, including Spanish. Previous studies evaluating the structural validity of the English and Spanish versions indicate a unidimensional factor structure in both languages. However, the psychometric properties of the Spanish language version have yet to be evaluated in samples outside of Spain, and the measure has not been tested for use among Hispanic Americans. This study evaluated the reliability, structural validity, and convergent validity of the English and Spanish language versions of the GAD-7 for Hispanic Americans in the United States. A community sample of 436 Hispanic Americans with an English (n = 210) or Spanish (n = 226) language preference completed the GAD-7. Multiple-group confirmatory factor analysis (CFA) was used to examine the goodness-of-fit of the unidimensional factor structure of the GAD-7 across language-preference groups. Results from the multiple-group CFA indicated a similar unidimensional factor structure with equivalent response patterns and item intercepts, but different variances, across language-preference groups. Internal consistency was good for both English and Spanish language-preference groups. The GAD-7 also evidenced good convergent validity as demonstrated by significant correlations in expected directions with the Perceived Stress Scale, the Patient Health Questionnaire-9, and the Physical Health domain of the World Health Organization Quality of Life-BREF assessment. The unidimensional GAD-7 is suitable for use among Hispanic Americans with an English or Spanish language preference.