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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., (Published by Oxford University Press on behalf of the Endocrine Society 2024.)

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.

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., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Farmer, Powell-Wiley, Middleton, Brooks, Mitchell, Troncoso, Ceasar, Claudel, Andrews, Kazmi, Johnson and Wallen.)

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., Competing Interests: The authors declare that they have no conflicts of interest regarding the publication of this study., (Copyright © 2021 Gwenyth R. Wallen et al.)

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., Competing Interests: Competing interestsT.H. reports role as President, Culinary Medicine Specialist Board (501c3 non-profit registered in Virginia). All other authors have no competing interests to report., (© The Author(s) 2020.)

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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.

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., (Copyright © 2018 The Authors. Published by Elsevier Ltd.. All rights reserved.)

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., Competing Interests: Approval to conduct the study was obtained through the National Institute of Diabetes and Digestive and Kidney Disease/ National Institute of Arthritis and Musculoskeletal and Skin Disease’s intramural institutional review board.The following language is included in the informed consent signed by each participant, “Data analyses will occur and results will be reported for presentation and/or publication”.SHM reports consulting fees from NIH during the conduct of the study and provides arthritis-related continuing education for yoga professionals. All remaining authors declare that there is no competing of interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

New organohypervalent iodine compounds, arylbenziodoxaborole triflates, were prepared from 1-acetoxybenziodoxaboroles and arenes by treatment with trifluoromethanesulfonic acid under mild conditions. Single crystal X-ray crystallography of these compounds revealed a pseudocyclic structure with a short intramolecular interaction of 2.698 to 2.717 Å between oxygen and iodine in the benziodoxaborole ring. These new pseudocyclic aryliodonium salts readily generate aryne intermediates upon treatment with water at room temperature. The generated aryne intermediates react with various substrates to give the corresponding aryne adducts in moderate to good yields. Furthermore, the new benzyne precursors can also work as arylating reagents towards aromatic rings. The aryne intermediates generated from arylbenziodoxaborole triflates selectively react with tert-butyl phenol forming products of ortho arylation in moderate yields., (© 2017 Wiley-VCH Verlag GmbH & Co. KGaA, Weinheim.)

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., (Published by Elsevier Ltd.)

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.

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.

The limited resource or strength model of self-control posits that the use of self-regulatory resources leads to depletion and poorer performance on subsequent self-control tasks. We conducted four studies (two with community samples, two with young adult samples) utilizing a frequently used depletion procedure (crossing out letters protocol) and the two most frequently used dependent measures of self-control (handgrip perseverance and modified Stroop). In each study, participants completed a baseline self-control measure, a depletion or control task (randomized), and then the same measure of self-control a second time. There was no evidence for significant depletion effects in any of these four studies. The null results obtained in four attempts to replicate using strong methodological approaches may indicate that depletion has more limited effects than implied by prior publications. We encourage further efforts to replicate depletion (particularly among community samples) with full disclosure of positive and negative results.