Qualitative development of the PROMIS Profile v1.0-Familial Chylomicronemia Syndrome (FCS) 28.

PURPOSE: Familial chylomicronemia syndrome (FCS) is a rare genetic disorder characterized by high triglyceride levels, significant disease burden, and negative impacts on health-related quality of life. This project aimed to create a PROMIS-based patient-reported outcome measure that represents valid and important concerns for patients with FCS. METHODS: We reviewed the literature and data from a previous qualitative study of FCS to identify key FCS symptoms and impacts, which were mapped to PROMIS domains to create a pool of eligible items. Candidate items were reduced per expert feedback and patients with FCS completed cognitive interviews to confirm content validity and measure content. RESULTS: Literature and qualitative data review identified ten key symptoms and 12 key impacts of FCS, including abdominal pain, fatigue, difficulty thinking, and worry about pancreatitis attacks. We identified 96 items primarily from PROMIS, supplemented with items from the Quality of Life in Neurological Disorders™ (Neuro-QoL™) and the Functional Assessment of Chronic Illness Therapy (FACIT) measurement systems. This pool was reduced to 32 candidate items, which were assessed via cognitive interviews with eight participants with FCS. Cognitive interview results and additional expert feedback led to the removal of four items and finalization of the PROMIS Profile v1.0-familial chylomicronemia syndrome (FCS) 28. CONCLUSIONS: The PROMIS Profile v1.0-familial chylomicronemia syndrome (FCS) 28 provides strong content validity for assessing quality of life among patients with FCS. The benefits of PROMIS, including norm-referenced mean values for each measure, will facilitate comparison of patients with FCS to other clinical populations.

The International Society for Behavioral Medicine (ISBM) and the Society of Behavioral Medicine (SBM) advocate for the inclusion of behavioral scientists in the implementation of the Global Action Plan for the prevention of non-communicable diseases (NCDs) in low- and middle-income countries.

Non-communicable diseases (NCDs) are the leading cause of death and disability in the world with the majority of deaths occurring in low- and middle-income countries (LMICs). The financial implications of disease and disability due to NCDs, combined with the costs of long-term management, are major causes of impoverishment and serve as barriers to socio-economic development. The transition from infectious diseases to NCDs as leading causes of mortality in LMICs is driven by several factors, primarily increasing globalization, urbanization, ageing of populations and economic development. Responding to these challenges will require local and comprehensive primary and secondary prevention efforts. The World Health Organization's Global Action Plan provides a road map and an array of policy options to achieve nine voluntary global targets by 2025. The primary responsibility of governments in responding to the challenge of NCDs includes international scientific cooperation to support national and local efforts. The implementation of such efforts to prioritize the prevention of NCDs will create an environment in which the rising trend of the NCD burden could be potentially halted and reversed. When developing NCD policies, stakeholders should consider evidence-based strategies which can be implemented by multidisciplinary teams that are led or have the participation of behavioral medicine scientists. Behavioral medicine strategies should be incorporated into the policy and intervention framework developed to target NCDs in LMICs.

The NIH Toolbox: Overview of Development for Use with Hispanic Populations.

OBJECTIVE: Hispanics/Latinos are the largest and fastest-growing minority population in the United States. To facilitate appropriate outcome assessment of this expanding population, the NIH Toolbox for Assessment of Neurological and Behavioral Function® (NIH Toolbox®) was developed with particular attention paid to the cultural and linguistic needs of English- and Spanish-speaking Hispanics/Latinos. METHODS: A Cultural Working Group ensured that all included measures were appropriate for use with Hispanics/Latinos in both English and Spanish. In addition, a Spanish Language Working Group assessed all English-language NIH Toolbox measures for translatability. RESULTS: Measures were translated following the Functional Assessment of Chronic Illness Therapy (FACIT) translation methodology for instances where language interpretation could impact scores, or a modified version thereof for more simplified translations. The Spanish versions of the NIH Toolbox Cognition Battery language measures (i.e., Picture Vocabulary Test, Oral Reading Recognition Test) were developed independently of their English counterparts. CONCLUSIONS: The Spanish-language version of the NIH Toolbox provides a much-needed set of tools that can be selected as appropriate to complement existing protocols being conducted with the growing Hispanic/Latino population in the United States.

Psychosocial and neighborhood correlates of health-related quality of life: A multi-level study among Hispanic adults.

OBJECTIVE: Improvement 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. METHOD: A 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. RESULTS: Higher 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. CONCLUSIONS: Findings 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).

Satisfaction with cancer care, self-efficacy, and health-related quality of life in Latino cancer survivors.

BACKGROUND: The objective of the current study was to examine how modifiable factors such as satisfaction with cancer care and self-efficacy impact health-related quality of life (HRQOL) among Latino cancer survivors. METHODS: Latinos previously diagnosed with breast, prostate, or colorectal cancer (N = 288) completed questionnaires (Patient Satisfaction with Cancer Care Scale, Stanford Chronic Disease Self-Management Measures, Functional Assessment of Cancer Therapy-General, and Short Acculturation Scale for Hispanics) within 2 years after receiving primary cancer treatment. RESULTS: Path model analyses demonstrated that satisfaction with cancer care was associated with greater HRQOL and that this relationship was explained by several facets of self-efficacy (ie, confidence in managing psychological distress [z = 3.81; P<.001], social support from close others [z = 2.46; P = .014], social/recreational activities [z = 3.30; P = .001], and patient-provider communication [z = -3.72; P<.001]). Importantly, foreign-born, less acculturated, and monolingual Spanish-speaking survivors reported lower self-efficacy in patient-provider communication; however, adjusting for acculturation, language, nativity, and other covariates did not alter these results. CONCLUSIONS: Factors that contribute to disparities in HRQOL among Latino cancer survivors compared with non-Latino whites, such as low income, less education, and a lack of health insurance, can be difficult to address. The findings of the current study emphasize the importance of self-efficacy within the context of patient-centered cancer care practices (eg, patient inclusion in care decisions, sufficient time with provider, ready access to medical advice) and suggest that improving satisfaction with care may increase patients' confidence in managing important aspects of their cancer experience and, in turn, improve HRQOL among Latino cancer survivors. Cancer 2018. © 2018 American Cancer Society. Cancer 2018;124:1770-9. © 2018 American Cancer Society.

Multidimensional profiles of health locus of control in Hispanic Americans.

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.

Psychosocial aspects of systemic sclerosis.

PURPOSE OF REVIEW: In 2010, an international consortium of researchers published a consensus agenda for research on psychosocial aspects of systemic sclerosis (SSc; scleroderma). The present review summarizes recent research on SSc-related depression and anxiety, fatigue and sleep, pain, pruritus, body image distress, sexual function, work disability, healthcare needs, psychosocial interventions, and psychoneuroimmunology. RECENT FINDINGS: Researchers have used structured interviews to establish prevalence rates for clinical mood disorders in SSc, although anxiety remains understudied and distress may be a useful outcome to consider. Longitudinal research has identified predictors of fatigue. Research on body image distress suggests the importance of changes in the facial skin and hands. Studies have identified sexual function problems in women and men with SSc. A prospective study found that breathing problems and fatigue predicted workplace disability. A randomized controlled trial evaluating multidisciplinary care showed benefits for health-related quality of life. SUMMARY: There has been a recent expansion in studies of psychosocial aspects of SSc, and in the validation of psychosocial measures that can be used in clinics to identify problems and track outcomes; however, prospective studies remain scarce. To better address the psychosocial needs of persons with SSc, interventions need to be developed and tested via randomized controlled trials with power to detect clinically meaningful changes.