CAHQL: A patient reported outcome instrument to assess health-related quality of life in congenital adrenal hyperplasia.

Context: Measuring health-related quality of life (HRQoL) is a crucial aspect of evaluating health care outcomes. Patients with congenital adrenal hyperplasia (CAH) often self-report deficiencies in HRQoL.

Objective: The aim of our study was to develop a disease-specific patient reported outcome (PRO) instrument to evaluate the HRQoL of patients >16 years old with classic congenital adrenal hyperplasia (CAH).

Assessing Acceptability: The Role of Understanding Participant, Neighborhood, and Community Contextual Factors in Designing a Community-Tailored Cooking Intervention.

Background: Cooking is an identified dietary strategy that is positively associated with optimal diet quality. Prior to initiating cooking interventions, evaluating the prospective acceptability of the intervention among community members living within low food access areas and understanding geospatial food shopping locations may aid in designing community-tailored interventions.

Methods: A sequential mixed methods study was conducted to determine the prospective acceptability of a planned community-located cooking intervention among African American adults living in a low food access area and with at least one cardiovascular disease risk factor.

Use of a focus group-based cognitive interview methodology to validate a cooking behavior survey among African-American adults.

Disparities in diet-related diseases persist among African-Americans despite advances in risk factor identification and evidence-based management strategies. Cooking is a dietary behavior linked to improved dietary quality and cardiometabolic health outcomes. However, epidemiologic studies suggest that African-American adults report a lower frequency of cooking at home when compared to other racial groups, despite reporting on average cooking time.

Reigniting Dr. Martin Luther King's call to action: the role of the behavioral scientist in the movement for social justice and racial equity.

A call to action for behavioral scientists to utilize the field’s collective set of knowledge and skills to conduct and support research to prevent racism and combat the effects of racism on health outcomes

A Randomized Clinical Hypnosis Pilot Study: Improvements in Self-Reported Pain Impact in Adults with Sickle Cell Disease.

Sickle cell disease (SCD) is characterized by recurrent painful vasoocclusive crises. Current evidence focuses on the frequency of acute pain crises resulting in emergency department use and nonplanned inpatient hospital admissions; yet few studies focus on pain sequelae outside the healthcare system or how individuals self-manage their chronic SCD-related pain. This study investigated the feasibility of a biobehavioral intervention as an adjunct nonpharmacological therapy to assist in the self-management of chronic pain.

A community feasibility study of a cooking behavior intervention in African-American adults at risk for cardiovascular disease: DC COOKS (DC Community Organizing for Optimal culinary Knowledge Study) with Heart.

Background: Cooking interventions have increased in popularity in recent years. Evaluation by meta-analyses and systematic reviews show consistent changes in dietary quality reports and cooking confidence, but not of cardiovascular (CVD) biomarkers. Interventions evaluating or reporting behavioral mechanisms as an explanatory factor for these outcomes has been sparse.

Time to listen: a mixed-method study examining community-based views of mobile technology for interventions to promote physical activity.

Introduction: A mixed-method, co-design approach to studying the adoption of mobile health (mHealth) technology among African-American (AA) women has not been fully explored. Qualitative data may contextualise existing knowledge surrounding perceptions of mHealth among AA women as part of formative work for designing a physical activity application (app).

Methods: A convenience sample of 16 AA women completed an informatics survey prior to participating in focus groups exploring their use of mobile technology and health apps.

Household Cooking Frequency of Dinner Among Non-Hispanic Black Adults is Associated with Income and Employment, Perceived Diet Quality and Varied Objective Diet Quality, HEI (Healthy Eating Index): NHANES Analysis 2007-2010.

Home cooking is associated with improved diet quality. Non-Hispanic Blacks, a population with diet-quality related health disparities, report lower home cooking than other racial/ethnic groups. Factors and subsequent dietary outcomes associated with this cooking disparity are relatively unknown.

Yoga for systemic lupus erythematosus (SLE): Clinician experiences and qualitative perspectives from students and yoga instructors living with SLE.

Unlabelled: Systemic lupus erythematosus (SLE) is an autoimmune disease associated with widespread inflammation and tissue damage. It is more common and severe among Blacks, Hispanics, and Asians; with higher incidence in women. While the goals of medical treatment are to prevent flares and reduce organ damage, up to 50% of patients perceive their health to be suboptimal with unaddressed needs including fatigue and pain.

Feasibility and assessment of outcome measures for yoga as self-care for minorities with arthritis: a pilot study.

Background: While there is a growing interest in the therapeutic benefits of yoga, minority populations with arthritis tend to be under-represented in the research. Additionally, there is an absence of guidance in the literature regarding the use of multicultural teams and sociocultural health beliefs, when designing yoga studies for a racially diverse population with arthritis. This pilot study examined the feasibility of offering yoga as a self-care modality to an urban, bilingual, minority population with osteoarthritis (OA) or rheumatoid arthritis (RA), in the Washington, DC area.

A qualitative approach exploring the acceptability of yoga for minorities living with arthritis: 'Where are the people who look like me?'.

Objectives: To examine the acceptability of yoga research tailored to recruit and retain a minority population (both English and Spanish speaking) with arthritis. Yoga research for arthritis often underrepresents minorities and acceptability for this population has not previously been investigated.

Design: Acceptability was evaluated using retention, adherence, journals, and semi-structured exit interviews from twelve participants with osteoarthritis or rheumatoid arthritis undergoing an 8-week yoga intervention.

Yoga Research and Spirituality: A Case Study Discussion.

There is growing evidence that yoga can be beneficial as an aspect of self-care for people with arthritis. However, yoga may be less acceptable to those from different cultures, socioeconomic backgrounds, and racial/ethnic identities. While implementing a feasibility/acceptability pilot study of yoga as self-care in minority communities, the subject of spirituality surfaced.

Randomized trial of hypnosis as a pain and symptom management strategy in adults with sickle cell disease.

Unlabelled: Sickle cell disease (SCD) is the most common genetic disease in African-Americans, characterized by recurrent painful vaso-occlusive crises. Medical therapies for controlling or preventing crises are limited because of efficacy and/or toxicity. This is a randomized, controlled, single-crossover protocol of hypnosis for managing pain in SCD patients.

Social support: a key variable for health promotion and chronic disease management in Hispanic patients with rheumatic diseases.

Chronic diseases, including rheumatic diseases, can cause immense physical and psychosocial burden for patients. Many Hispanics suffering with arthritis face activity limitations. Social support, or the functional content of relationships, may be important to consider when examining treatment and outcomes for Hispanic individuals.

A pilot study of yoga as self-care for arthritis in minority communities.

Background: While arthritis is the most common cause of disability, non-Hispanic blacks and Hispanics experience worse arthritis impact despite having the same or lower prevalence of arthritis compared to non-Hispanic whites. People with arthritis who exercise regularly have less pain, more energy, and improved sleep, yet arthritis is one of the most common reasons for limiting physical activity. Mind-body interventions, such as yoga, that teach stress management along with physical activity may be well suited for investigation in both osteoarthritis and rheumatoid arthritis.

Patients' and community leaders' perceptions regarding conducting health behavior research in a diverse, urban clinic specializing in rheumatic diseases.

Background: Disparities in the incidence, prevalence, severity, care, and outcomes for rheumatic diseases exist among racial and ethnic groups compared with White Americans.

Objective: This paper describes a community-based participatory research (CBPR) approach engaging researchers, community leaders, and patients in purposeful dialogues related to the implementation of health behavior research in an urban rheumatic disease clinic.

Methods: Seven focused discussions were led in either English or Spanish.

Validating English- and Spanish-language patient-reported outcome measures in underserved patients with rheumatic disease.

Introduction: Rheumatic diseases are among the most common and debilitating health problems in the United States. These diseases are chronic, can result in severe decrements of physical and psychosocial functioning and affect patients' overall quality of life. A consensus regarding the best patient outcomes to be measured in randomized, controlled trials and prospective natural history studies is essential to provide best estimates of efficacy and safety of interventions across diverse patient populations.

Factors associated with ability to treat pediatric emergencies in US hospitals.

Objective: The purpose of this analysis is to investigate hospital and community factors associated with the availability of pediatric services, expertise, and supplies in US hospitals for treating pediatric emergencies.

Methods: Data from the Emergency Pediatric Services and Equipment Supplement, a component of the 2002-2003 National Hospital Ambulatory Medical Care Survey, were merged with hospital and community characteristics to model preparedness to treat pediatric emergencies. The National Hospital Ambulatory Medical Care Survey samples nonfederal, short-stay, and general hospitals in the United States.

National Hospital Ambulatory Medical Care Survey: 2004 outpatient department summary.

Objectives: This report describes ambulatory care visits to hospital OPDs in the United States. Statistics are presented on selected hospital, patient, and visit characteristics. Selected trends in OPD utilization from 1994 through 2004 are also presented.

Availability of pediatric services and equipment in emergency departments: United States, 2002-03.

Objectives: This report presents estimates on the availability of pediatric services, expertise, and supplies for treating pediatric emergencies in U.S. hospitals.