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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). DESIGN, SETTING AND OUTCOMES: Following the FDA guidelines for developing PRO instruments, we developed a conceptual framework for the instrument. A preliminary instrument was created after interviewing a representative sample of 12 patients with CAH between 16 to 68 years old and 3 parents, and obtaining expert feedback from 4 endocrinologists. The instrument was edited after cognitive interviews with 6 patients. Internal consistency of the instrument was evaluated using Cronbach's alpha. Validity was assessed by comparing the scores of our instrument with scores from widely used validated instruments for HRQoL and PRO not specific to CAH. RESULTS: Sixty-nine patients 16 to 75 years old participated in validating our preliminary instrument. The final questionnaire consists of 44 questions within 7 domains: General Health, Adrenal Insufficiency, Glucocorticoid Excess, Physical Functioning, Mental Health and Cognition, Social Functioning, and Sexual Functioning, with acceptable internal consistency (Chronbach's alpha≥0.6) and validity (r = -0.350 to 0.866). CONCLUSION: CAHQL is the first validated PRO instrument to capture disease specific HRQoL outcomes in CAH. In addition to its anticipated use in the clinical setting, the instrument could be used to assess the efficacy of novel treatments in development.
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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. A semi-structured guide was used to conduct five virtual focus groups. Qualitative data were analyzed using thematic analysis and validated through participant check-in interviews. Survey responses were analyzed based on descriptive data. Geospatial analysis of participant locations that were reported for food shopping was conducted to show food environment utilization. RESULTS: Focus groups with study participants (n = 20, all female, mean age 60.3, SD 9.3, mean cooking frequency per week 4.0, food insecure n = 7) were conducted between March and April, 2021. Thematic analysis of the focus group transcripts identified five main themes as follows: (A) Barriers to Cooking (family and caregiving, transportation, COVID-19 pandemic, time availability, household composition); (B) Motivators for Cooking (family, caregiving, health, enjoyment, COVID-19 pandemic); (C) Strategies (food shopping, social support, social media, meal planning); (D) Neighborhood (gentrification, perceived safety, stigmatization, disparities in grocery stores); (E) and Acceptability of the Intervention (reasons to participate, barriers, recruitment, intervention delivery). Participant validation interviews confirmed the themes and subthemes as well as the illustrative quotes. Geospatial analysis showed a majority of locations were outside of the participants' residential areas. CONCLUSIONS: Prospective acceptability of a community-tailored cooking intervention found that the planned intervention could be modified to address individual level factors, such as caregiving and health, community contextual factors, such as perceived safety, and the general health needs of the community.
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COVID-19 , Pandemias , Adulto , Humanos , Feminino , Lactente , Estudos Prospectivos , Culinária , Dieta/métodosRESUMO
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. Yoga users are predominantly white, female, and college educated. There are few studies that examine yoga in minority populations; none address arthritis. This paper presents a study protocol examining the feasibility and acceptability of providing yoga to an urban, minority population with arthritis. METHODS/DESIGN: In this ongoing pilot study, a convenience sample of 20 minority adults diagnosed with either osteoarthritis or rheumatoid arthritis undergo an 8-week program of yoga classes. It is believed that by attending yoga classes designed for patients with arthritis, with racially concordant instructors; acceptability of yoga as an adjunct to standard arthritis treatment and self-care will be enhanced. Self-care is defined as adopting behaviors that improve physical and mental well-being. This concept is quantified through collecting patient-reported outcome measures related to spiritual growth, health responsibility, interpersonal relations, and stress management. Additional measures collected during this study include: physical function, anxiety/depression, fatigue, sleep disturbance, social roles, and pain; as well as baseline demographic and clinical data. Field notes, quantitative and qualitative data regarding feasibility and acceptability are also collected. Acceptability is determined by response/retention rates, positive qualitative data, and continuing yoga practice after three months. DISCUSSION: There are a number of challenges in recruiting and retaining participants from a community clinic serving minority populations. Adopting behaviors that improve well-being and quality of life include those that integrate mental health (mind) and physical health (body). Few studies have examined offering integrative modalities to this population. This pilot was undertaken to quantify measures of feasibility and acceptability that will be useful when evaluating future plans for expanding the study of yoga in urban, minority populations with arthritis. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01617421.
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Artrite/etnologia , Pesquisa Participativa Baseada na Comunidade , Comportamentos Relacionados com a Saúde/etnologia , Autocuidado/métodos , Yoga , Adulto , Artrite/diagnóstico , Artrite/terapia , Feminino , Humanos , Maryland , Terapias Mente-Corpo , National Institute of Arthritis and Musculoskeletal and Skin Diseases (U.S.) , Seleção de Pacientes , Indicadores de Qualidade em Assistência à Saúde , Projetos de Pesquisa , Fatores Socioeconômicos , Inquéritos e Questionários , Resultado do Tratamento , Estados UnidosRESUMO
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. To better understand cooking behavior among African-Americans and reported disparities in behavior, we sought to develop a survey instrument using focus group-based cognitive interviews, a pretesting method that provides insights into a survey respondent's interpretation and mental processing of survey questions. A comprised survey instrument was developed based on input from a community advisory board, a literature review, and a content review by cooking behavior experts. The cognitive interview pretesting of the instrument involved African-American adults (n = 11) at risk for cardiovascular disease who were recruited from a community-based participatory research study in Washington, D.C., to participate in a focus group-based cognitive interview. Cognitive interview methodologies included the verbal think-aloud protocol and the use of retrospective probes. Thematic analysis and evaluation of verbalized cognitive processes were conducted using verbatim transcripts. Five thematic themes related to the survey were generated: (1) Clarity and relevancy of question items; (2) influence of participants' perspectives and gender roles; (3) participant social desirability response to questions; (4) concern regarding question intent. Eleven survey items were determined as difficult by participants. Cooking topics for these items were: cooking practices, cooking skills, cooking perception (how one defines cooking), food shopping skills, and socialization around cooking. Question comprehension and interpreting response selections were the most common problems identified. Cognitive interviews are useful for cooking research as they can evaluate survey questions to determine if the meaning of the question as intended by the researcher is communicated to the respondents-specific implications from the results that apply to cooking research include revising questions on cooking practice and skills. Focus-group-based cognitive interviews may provide a feasible method to develop culturally grounded survey instruments to help understand disparities in behavior for culturally relevant diet behaviors such as cooking.
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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 randomized, controlled clinical trial of hypnosis was conducted in outpatients with SCD (n = 31). Patient-reported outcomes (PROs) administered at baseline, five, and twelve weeks from both groups included pain frequency, intensity, and quality (Pain Impact Scale (PIQ) and Numerical Rating Scales); anxiety (State-Trait Anxiety Inventory), coping strategies (Coping Strategies Scale), sleep (Pittsburgh Sleep Quality Index (PSQI)), and depression (Beck Depression Inventory (BDI)). The same PROs were collected at weeks seventeen and twenty-four from the control group after the crossover. No significant group by time interaction effects were found in any of the PROs based on the repeated-measures mixed models. The PIQ and PSQI scores decreased over time in both groups. Post hoc pairwise comparisons with the Bonferroni adjustment indicated that the mean PIQ score at baseline decreased significantly by week 12 (p = 0.01) in the hypnosis group. There were no significant changes across time before and after the crossover in any of the PROs in the control group. As suggested by these findings, pain impact and sleep in individuals with SCD may be improved through guided mind-body and self-care approaches such as hypnosis.
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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. Moreover, evaluations of cooking interventions among communities with health disparities or food access limitations have received little attention in the literature. METHODS: This study will occur over two phases. Phase 1 will assess acceptability among the target population of African-American adults living within an urban food desert. Phase 2 will consist of a 6-week cooking intervention delivered at a community kitchen setting. Pre and post intervention visits for clinical examinations and biomarker collection will be conducted, as well as dietary and cooking skill assessments. Primary outcomes include cooking behavior and feasibility measures. Secondary outcomes are related to dietary quality, psychosocial factors, CVD biomarkers, and food environment measures. DISCUSSION: This study seeks to demonstrate feasibility of a community-based cooking intervention and to provide necessary information to plan future interventions that identify cooking behavior as an outcome of participation in cooking interventions among African-American adults, especially in relation to dietary and biomarker outcomes. TRIAL REGISTRATION: This study was registered at ClinicalTrials.gov (NCT04305431) on March 12, 2020.
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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. Survey responses provided frequency data, while iterative transcript analysis of focus groups identified themes. RESULTS: The majority of participants (mean age=62.1 years, SD=6.6) felt comfortable using a tablet/smartphone (75.0%). Most (68.8%) reported using health-related apps, primarily focused on physical activity and nutrition. Focus groups revealed four overarching concepts, including (1) user attachment, (2) technology adoption, (3) potential facilitators and (4) potential barriers. Important features which may serve as facilitators or barriers to future adoption of a mobile app for an mHealth intervention include individual app tailoring and software concerns, respectively. DISCUSSION: Thematic analysis revealed high user attachment to smartphones and described participants' process for adopting new mHealth technology. CONCLUSION: Early engagement of target end users as a part of a broader co-design and community-based participatory research process for developing mHealth technologies may be useful for sustained adoption of these tools in future mHealth behavioural interventions.
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População Negra/estatística & dados numéricos , Pesquisa Participativa Baseada na Comunidade , Exercício Físico/fisiologia , Promoção da Saúde , Smartphone/tendências , Telemedicina/tendências , Doenças Cardiovasculares/prevenção & controle , Feminino , Grupos Focais , Humanos , Invenções , Pessoa de Meia-Idade , Aplicativos Móveis , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
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. A secondary analysis was performed using demographic and consumer behavior data from the 2007-2010 cycles of the National Health and Nutrition Examination Survey (NHANES) to identify factors associated with household cooking frequency of dinner among Non-Hispanic Blacks. Self-reported dietary data were used to calculate Healthy Eating Index-2010 (HEI-2010) to determine cooking related objective diet quality. Lower income, unemployment, and higher perceived diet quality were significantly associated with higher cooking frequency (p < 0.05). For diet quality, higher vegetable (p = 0.031), lower empty calorie intake (p = 0.002), higher dinner time protein (p = 0.004) and lower dinner time dairy intake (p = 0.003) were associated with cooking. Total HEI scores were associated with higher cooking frequency for middle income (p = 0.007), but not higher or lower income categories (p = 0.306; p = 0.384), respectively. On average, factors associated with cooking frequency were psychosocial, income, and employment related. Objective diet quality as measured by HEI was variable. Future dietary studies among Non-Hispanic Blacks should include cooking, socioeconomic status and perceived diet quality as particularly relevant factors of interest.
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Negro ou Afro-Americano , Culinária , Dieta Saudável , Emprego , Renda , Estado Nutricional , Adulto , Características da Família , Comportamento Alimentar , Feminino , Humanos , Masculino , Inquéritos Nutricionais , Classe SocialRESUMO
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. Recent SLE treatment guidelines focus on improving quality of life. Yoga has shown improvements in quality-of-life and fatigue in various diagnoses. While there is growing evidence that yoga therapy may help osteoarthritis and rheumatoid arthritis symptoms, there is only one reference in the literature related to SLE. METHODS/SETTING: An adjunct study was undertaken to evaluate adapting the Yoga as Self Care for Arthritis in Minority Communities study for a bilingual population living with SLE in the Washington, DC area. Informants included 7 patients enrolled onto the study, and 3 yoga instructors living with SLE. Qualitative methods included journals and semi-structured interviews. RESULTS: Enrolling patients clarified revisions for intake questionnaires, and symptoms that may impact class participation. Participants demonstrated increased balance, body awareness, and tolerated a faster-paced yoga class when compared to those in the parent study. Yoga instructors' recommendations included modifying yoga based on energy levels and frequent changes in physical ability. CONCLUSION: This paper shares perspectives from various informants and affirms the feasibility of progressing to a larger study. It summarizes our findings and recommendations towards creating a randomized controlled trial, as there are currently none in the literature.
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Exercício Físico , Lúpus Eritematoso Sistêmico , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida , Yoga , Adulto , Artrite , District of Columbia , Fadiga , Feminino , Humanos , Lúpus Eritematoso Sistêmico/complicações , Lúpus Eritematoso Sistêmico/terapia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Autocuidado , Estudantes , Inquéritos e QuestionáriosRESUMO
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. METHODS: The primary objective of the study was to assess the feasibility of offering an 8-week, bilingual yoga intervention adapted for arthritis to a convenience sample of primarily Hispanic and Black/African-American adults. A racially diverse interdisciplinary research team was assembled to design a study to facilitate recruitment and retention. The second objective identified outcome measures to operationalize potential facilitators and barriers to self-care and self-efficacy. The third objective determined the feasibility of using computer-assisted self-interview (CASI) for data collection. RESULTS: Enrolled participants (n = 30) were mostly female (93%), Spanish speaking (69%), and diagnosed with RA (88.5%). Feasibility was evaluated using practicality, acceptability, adaptation, and expansion of an arthritis-adapted yoga intervention, modified for this population. Recruitment (51%) and participation (60%) rates were similar to previous research and clinical experience with the study population. Of those enrolled, 18 started the intervention. For adherence, 12 out of 18 (67%) participants completed the intervention. All (100%), who completed the intervention, continued to practice yoga 3 months after completing the study. Using nonparametric tests, selected outcome measures showed a measurable change post-intervention suggesting appropriate use in future studies. An in-person computerized questionnaire was determined to be a feasible method of data collection. CONCLUSIONS: Findings from this pilot study confirm the feasibility of offering yoga to this racially/ethnically diverse population with arthritis. This article provides recruitment/retention rates, outcome measures with error rates, and data collection recommendations for a previously under-represented population. Suggestions include allocating resources for translation and using a multicultural design to facilitate recruitment and retention. TRIAL REGISTRATION: ClinicalTrials.gov, NCT01617421.
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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. The Emergency Pediatric Services and Equipment Supplement was based on the 2001 guidelines developed by the American Academy of Pediatrics and the American College of Emergency Physicians. Estimates were weighted to produce unbiased national estimates of pediatric services, expertise, and equipment availability in emergency departments. Logistic regression was used to model the probability of being better prepared based on the above guidelines. RESULTS: Bivariate analyses showed that hospital inpatient pediatric structure was linearly related to availability of supplies. However, inpatient structure was not associated with presence of a pediatric trauma service or written transfer agreement. Logistic regressions with each preparedness measure indicated that, after adjusting for hospital and community factors, pediatric volume, teaching hospital status, geographic region, and per capita income of the community were strongly related to being better prepared on each of the preparedness measures. CONCLUSIONS: To meet the 2001 guidelines, emergency departments need to improve their inventory of pediatric supplies, and hospitals that do not have specialized inpatient services need to implement written transfer agreements with other hospitals.
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Serviço Hospitalar de Emergência/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Pediatria/estatística & dados numéricos , Criança , Serviço Hospitalar de Emergência/normas , Guias como Assunto , Pesquisas sobre Atenção à Saúde , Tamanho das Instituições de Saúde/estatística & dados numéricos , Hospitais/estatística & dados numéricos , Humanos , Modelos Logísticos , Pediatria/normas , Características de Residência/estatística & dados numéricos , Fatores Socioeconômicos , Estados Unidos/epidemiologiaRESUMO
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. Journal quotes were analyzed using content analysis techniques. NVivo software was used to organize transcripts and assemble themes. Two methods of triangulation (data and investigator) were used to overcome potential bias from a single-perspective interpretation. Exit interview comments were content analyzed using a card sort method. The study was designed with a cultural infrastructure including a multicultural research team, translators, and bilingual materials and classes, to facilitate trust and acceptability for primarily Hispanic and Black/African-American adults. SETTING: Washington, D.C. metropolitan area, USA. RESULTS: On average participants attended 10 of 16 classes, with home practice 2-3days a week. All who completed were still practicing yoga three-months later. Qualitative narrative analysis identified major themes related to facilitating factors and barriers for yoga practice, self-efficacy, and support. Participant comments indicated that offering an arthritis-based yoga intervention and using a culturally congruent research design was found to be acceptable. CONCLUSIONS: As yoga research grows, there is a need to understand and promote acceptability for typically under-represented populations. This study attempts to inform the expansion of multicultural research designed to recruit and retain those from diverse backgrounds.
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Artrite Reumatoide/terapia , Grupos Minoritários/psicologia , Osteoartrite/terapia , Yoga/psicologia , Adulto , Idoso , Artrite Reumatoide/etnologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Osteoartrite/etnologiaRESUMO
OBJECTIVES: This report presents estimates on the availability of pediatric services, expertise, and supplies for treating pediatric emergencies in U.S. hospitals. METHODS: The Emergency Pediatric Services and Equipment Supplement (EPSES) was a self-administered questionnaire added to the 2002-03 National Hospital Ambulatory Medical Care Survey (NHAMCS). NHAMCS samples non-Federal, short-stay and general hospitals in the United States. The EPSES content was based on the 2001 guidelines for pediatric services, medical expertise, small-sized supplies, and equipment for emergency departments (EDs) developed by the American Academy of Pediatrics (AAP) and the American College of Emergency Physicians (ACEP). Combined response rate for both years was 86 percent. Estimates were weighted to produce average annual estimates of pediatric services, expertise, and equipment availability in EDs. RESULTS: One-half of hospitals (52.9 percent) admitted pediatric patients, but did not have a specialized inpatient pediatric ward. One-third (38.3 percent) admitted pediatric patients and had a separate pediatric ward; the remainder did not admit pediatric patients. Among those that did not admit pediatric cases, 30.4 percent were in counties that had a children's hospital. One-quarter of EDs had access 24 hours and 7 days a week to a board-certified pediatric emergency medicine attending physician. Only 5.5 percent had all recommended pediatric supplies, but one-half had greater than 85 percent of recommended supplies. Most hospitals without pediatric trauma service (90.7 percent) or pediatric intensive care units (97.5 percent) transferred critical pediatric patients to hospitals with these services. EDs in hospitals with specialized inpatient facilities for children were more likely to meet the AAP and ACEP guidelines for pediatric ED services, expertise, and supplies.
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Serviços de Saúde da Criança/provisão & distribuição , Serviço Hospitalar de Emergência/normas , Pesquisas sobre Atenção à Saúde , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Pediatria/estatística & dados numéricos , Adolescente , Criança , Serviços de Saúde da Criança/normas , Serviços de Saúde da Criança/estatística & dados numéricos , Serviço Hospitalar de Emergência/estatística & dados numéricos , Equipamentos e Provisões Hospitalares/provisão & distribuição , Unidades Hospitalares/estatística & dados numéricos , Unidades Hospitalares/provisão & distribuição , Humanos , Admissão do Paciente , Pediatria/instrumentação , Pediatria/normas , Guias de Prática Clínica como Assunto , Inquéritos e Questionários , Estados UnidosRESUMO
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. METHODS: The data presented in this report were collected in the 2004 NHAMCS, a national probability sample survey of visits to emergency and outpatient departments of nonfederal, short-stay, and general hospitals in the United States. Selected comparisons are also made with data from the 2004 National Ambulatory Medical Care Survey (NAMCS), a national probability sample survey of visits to office-based physicians in the United States. Sample data are weighted to produce annual national estimates. RESULTS: During 2004, an estimated 85.0 million visits were made to hospital OPDs in the United States, about 29.5 visits per 100 persons. Females (35.1 per 100 persons) had higher OPD visit rates than males (23.6 per 100 persons), and black or African American persons (50.3 per 100 persons) had higher OPD visit rates than white persons (27.0 visits per 100 persons). The overwhelming majority of visits to hospital OPDs were made by established patients (85.4 percent). Females made 75.5 percent of preventive care visits. The preventive care visit rate by Hispanic or Latino patients was twice the rate of non-Hispanic patients. Diagnostic and screening services were ordered at 90.3 percent of visits, therapeutic and preventive services were ordered at 50.0 percent of visits, and medications were ordered at 67.4 percent of visits. The proportion of visits involving only midlevel providers increased from 5.9 in 1993-94 to 11.4 percent of visits in 2003-04.
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Pesquisas sobre Atenção à Saúde , Ambulatório Hospitalar/estatística & dados numéricos , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Estados UnidosRESUMO
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. This commentary shares the experience of the researchers and yoga teachers collaborating on the study and the larger conversation that ensued following the withdrawal of one of the study participants. It is an attempt to start a relevant and needed dialogue around yoga research as an integrative health modality, and why the underlying body-mind-spirit approach to yoga may sometimes serve as a barrier to participation for diverse populations suffering from arthritis.
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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. Participants were recruited from an urban community health center (CHC) as part of a larger health behavior study. A cross-sectional, descriptive, mixed methods analysis was conducted to explore the role of social support in the sample. Only Hispanic/Latino patients (n = 46) were included in this analysis. Interviews were conducted in both English and Spanish. The majority of the sample (87%) perceived some presence of social support in their lives. The two most commonly cited types of social support were emotional and instrumental. The two most common sources of social support were family members other than spouses (52.2%) and spouses (32.6%). Body mass index (BMI) was significantly correlated with the number of perceived sources of support. The presence or absence and the role of social support in supporting optimal health outcomes should be considered for Hispanics with chronic rheumatic diseases. Involving family members and spouses in the plan of care for this population could facilitate health promotion and chronic disease management.
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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. Participants receive hypnosis from a trained hypnosis therapist followed by six weeks of self-hypnosis using digital media. Those in the control arm receive SCD education followed by a six-week waiting period before crossing over to the hypnosis arm of the study. Outcome measures include assessments of pain (frequency, intensity and quality), anxiety, coping strategies, sleep, depression, and health care utilization. To date, there are no published randomized, controlled trials evaluating the efficacy of hypnosis on SCD pain modulation in adults. Self-hypnosis for pain management may be helpful in modulating chronic pain, improving sleep quality, and decreasing use of narcotics in patients with SCD. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00393250.
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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. Discussions were audiotaped and transcribed verbatim. RESULTS: Six community leaders and nine patients participated in the seven scheduled focused discussions. Transcripts uncovered five major themes that assisted with study design: trust, patient-provider relationship, study implementation suggestions, decreased functional capacity, and access to healthcare. CONCLUSIONS: Engaging community partners and patients in informal and formal discussions from early phases of research design through implementation, followed by systematic application of these insights, may serve to accelerate the potential for translation from findings into improved clinical practice and optimal outcomes.
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Participação da Comunidade/métodos , Pesquisa Participativa Baseada na Comunidade/organização & administração , Comportamentos Relacionados com a Saúde/etnologia , Disparidades nos Níveis de Saúde , Doenças Reumáticas/etnologia , Adulto , Idoso , Feminino , Acessibilidade aos Serviços de Saúde/organização & administração , Pesquisa sobre Serviços de Saúde , Humanos , Liderança , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais , Relações Profissional-Paciente , Confiança , População UrbanaRESUMO
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. METHODS: Face-to-face English- and Spanish-language cognitive interviews were conducted among urban Hispanic and African American patients with rheumatic disease to develop a questionnaire booklet. Six measures validating patient-reported outcomes were included: the Arthritis Self-Efficacy Scale, the Stanford Health Assessment Questionnaire Disability Index, the Wong-Baker Faces Pain Scale, the Short Acculturation Scale, the Center for Epidemiologic Studies Depression Scale and the Inventory of Complementary and Alternative Medicine Practices. A sample of patients (n = 15) attending the National Institute of Arthritis and Musculoskeletal and Skin Diseases Community Health Center participated in the initial interviews. Revised measures were further tested for reliability in a separate sample of patients (n = 109) upon enrollment at the health center. RESULTS: Cognitive interviews provided feedback for questionnaire modifications and methods to enhance content validity and data quality, including discarding redundant questions, providing visual aids and concrete examples when appropriate and increasing the use of racially and ethnically concordant interviewers. The cognitive interviews further elucidated that some contextual assumptions and language usage in the original questionnaires may not have taken each respondent's environmental and sociocultural context into consideration. Internal reliability for previously tested measures remained high (Cronbach's α = 0.87-0.94). CONCLUSIONS: Cognitive interviewing techniques are useful in a diverse sample of racial and ethnic minority patients with rheumatic disease as a method to assess the content validity of the specific outcome measures selected. The data collection approaches and methods described here ultimately enhance data quality. Vigilance is required in the selection of outcome measures in studies or in practice, particularly with each new language translation and/or culturally unique or diverse sample.