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Patient race/ethnicity data collection in most U.S. health systems abide by federal standards, determined by the federal Office of Management and Budget. Yet, decades of research show that reliance on these categories alone limits understanding of within-group health disparities, systematically erasing key groups from health data. Because granular race/ethnicity data is complex and patients may be hesitant to disclose this personal information, it is important for health leaders to consider community perspectives when making decisions about race/ethnicity data procedures. As such, this study uses community focus groups to understand: (1) how individuals representing different racial/ethnic identities perceive the collection of race/ethnicity in healthcare settings; (2) differences in opinions between disaggregated race/ethnicity data collection instruments and those using federal standards; and (3) recommended practices for collecting race/ethnicity from patients. Participants self-selected into 13 focus groups and one key informant interview based on the race/ethnicity with which they most closely identified. Audio recordings from these groups were transcribed and evaluated using thematic content analysis. Among the 83 total participants in this study, there was a strong preference for more flexible and specific options for self-identifying race/ethnicity in healthcare settings. Participants also felt comfortable disclosing granular race/ethnicity to health providers but expressed discomfort with disclosing this information for other purposes. Recommendations for healthcare leaders include ensuring patients receive detailed communication about race/ethnicity data use and purpose, allowing multiple category selection, keeping the list of disaggregated response options short so as to not overwhelm patients, and providing a free text option to ensure inclusivity.
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PURPOSE: The purpose of this study was to explore how treatment adherence and lifestyle changes required for glycemic control in type 2 diabetes (T2D) are related to quality of life (QoL) among predominantly ethnic minority and socioeconomically disadvantaged adults engaged in making changes to improve T2D self-management. METHODS: Adults with T2D in New York City were recruited for the parent study based on recent A1C (≥7.5%) and randomly assigned to 1 of 2 arms, receiving educational materials and additional self-management support calls, respectively. Substudy participants were recruited from both arms after study completion. Participants (N = 50; 62% Spanish speaking) were interviewed by phone using a semistructured guide and were asked to define QoL and share ways that T2D, treatment, self-management, and study participation influenced their QoL. Interviews were analyzed using thematic analysis. RESULTS: QoL was described as a multidimensional health-related construct with detracting and enhancing factors related to T2D. Detracting factors included financial strain, symptom progression and burden, perceived necessity to change cultural and lifestyle traditions, and dietary and medical limitations. Enhancing factors included social support, diabetes education, health behavior change, sociocultural connection. CONCLUSION: QoL for diverse and socioeconomically disadvantaged adults with T2D is multifaceted and includes aspects of health, independence, social support, culture, and lifestyle, which may not be captured by existing QoL measures. Findings may inform the development of a novel QoL measure for T2D.
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Diabetes Mellitus Tipo 2 , Adulto , Humanos , Qualidade de Vida , Etnicidade , Grupos Minoritários , Estilo de VidaRESUMO
BACKGROUND: The 2016 U.S. Centers for Disease Control Opioid Prescribing Guideline (CDC Guideline) is currently being revised amid concern that it may be harmful to people with chronic pain on long-term opioid therapy (CP-LTOT). However, a methodology to faithfully implement the CDC guideline, measure prescriber adherence, and systematically test its effect on patient and public health outcomes is lacking. We developed and tested a CDC Guideline implementation strategy (termed TOWER), focusing on an outpatient HIV-focused primary care setting. METHODS: TOWER was developed in a stakeholder-engaged, multi-step iterative process within an Information, Motivation and Behavioral Skills (IMB) framework of behavior change. TOWER consists of: 1) a patient-facing opioid management app (OM-App); 2) a progress note template (OM-Note) to guide the office visit; and 3) a primary care provider (PCP) training. TOWER was evaluated in a 9-month, randomized-controlled trial of HIV-PCPs (N = 11) and their patients with HIV and CP-LTOT (N = 40). The primary outcome was CDC Guideline adherence based on electronic health record (EHR) documentation and measured by the validated Safer Opioid Prescribing Evaluation Tool (SOPET). Qualitative data including one-on-one PCP interviews were collected. We also piloted patient-reported outcome measures (PROMs) reflective of domains identified as important by stakeholders (pain intensity and function; mood; substance use; medication use and adherence; relationship with provider; stigma and discrimination). RESULTS: PCPs randomized to TOWER were 48% more CDC Guideline adherent (p < 0.0001) with significant improvements in use of: non-pharmacologic treatments, functional treatment goals, opioid agreements, prescription drug monitoring programs (PDMPs), opioid benefit/harm assessment, and naloxone prescribing. Qualitative data demonstrated high levels of confidence in conducting these care processes among intervention providers, and that OM-Note supported these efforts while experience with OM-App was mixed. There were no intervention-associated safety concerns (defined as worsening of any of the PROMs). CONCLUSIONS: CDC-guideline adherence can be promoted and measured, and is not associated with worsening of outcomes for people with HIV receiving LTOT for CP. Future work would be needed to document scalability of these results and to determine whether CDC-guideline adherence results in a positive effect on public health. Trial registration https://clinicaltrials.gov/ct2/show/NCT03669939 . Registration date: 9/13/2018.
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Dor Crônica , Infecções por HIV , Analgésicos Opioides/efeitos adversos , Dor Crônica/tratamento farmacológico , Fidelidade a Diretrizes , Infecções por HIV/complicações , Infecções por HIV/tratamento farmacológico , Humanos , Manejo da Dor , Padrões de Prática MédicaRESUMO
CONTEXT: The COVID-19 pandemic has resulted in a record number of deaths in the United States and tremendous economic and personal strain. During 2020, in anticipation of a vaccine to slow the spread of disease, local and state governments in the United States developed plans for vaccine prioritization, given a limited initial supply. Recognizing the challenges inherent in prioritization, the New York City (NYC) health department sought guidance from members of the public about the fairest approach to early-stage vaccine distribution. OBJECTIVE: To solicit recommendations from NYC residents on priorities regarding vaccine access for essential worker occupations, considering risk factors and preferred approaches to fairness. IMPLEMENTATION: Five public deliberations were conducted with NYC residents (N = 91). Participants heard presentations on the COVID-19 vaccine, the local distribution of illness and death, and approaches to fairness in the context of deliberating on priorities for 6 essential worker occupations and 4 risk factors. Discussions were transcribed, and transcriptions were coded and analyzed using preidentified and emergent themes. Pre- and post-surveys, focused on factors relevant to prioritization, were administered during each public deliberation. RESULTS: Recommendations for prioritization emphasized risk of severe morbidity and mortality, and work and neighborhood conditions with fewer protections (eg, in-person work, exposure to many people). Participants prioritized elementary schoolteachers, grocery store workers, and bus drivers, underlying health conditions, and neighborhood of residence. Participants focused on equity, recognizing that those at highest risk were largely low-income populations of color and individuals living in low-resourced neighborhoods. CONCLUSIONS: Participants' focus on equity, and acknowledgment of racial and ethnic disparities, revealed a nuanced understanding of the broader determinants of health. Recommendations reinforced the NYC health department's approach to vaccine distribution. PUBLIC HEALTH IMPLICATIONS: Results from these public deliberations confirmed community support for approaches prioritizing health equity, recognizing both societal and personal factors affecting vulnerability to poor health.
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Vacinas contra COVID-19 , COVID-19 , Humanos , Cidade de Nova Iorque , Pandemias , SARS-CoV-2 , Estados UnidosRESUMO
ABSTRACTRates of opioid use disorder and associated deaths remain alarmingly high. Measures to address the epidemic have included reductions in opioid prescribing, in part guided by the Centers for Disease Control Opioid Prescribing Guideline (CDCG). While reductions in over-prescribing have occurred, these measures have also resulted in decreased access and adverse outcomes for some stable opioid-treated chronic pain patients. The TOWard SafER Opioid Prescribing (TOWER) intervention was designed to support HIV primary care providers in use of the CDCG and in decision-making and patient-provider communication regarding safe opioid prescribing. Eleven HIV primary care providers and 40 of their patients were randomized into intervention and control groups. Transcripts from 21 patient visits were analyzed, focusing on opioid and pain-related communications. Findings from this research indicate greater alignment with the CDCG among visits carried out with providers in the TOWER intervention group. However, control group visits were notably consistent with guideline recommendations in several key areas. Differences observed between the intervention and control group visits demonstrate intervention strengths, as well as areas where additional work needs to be done to ensure prescribing and communication consistent with the CDCG.
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Dor Crônica , Infecções por HIV , Transtornos Relacionados ao Uso de Opioides , Analgésicos Opioides/uso terapêutico , Dor Crônica/complicações , Dor Crônica/tratamento farmacológico , Infecções por HIV/complicações , Infecções por HIV/tratamento farmacológico , Humanos , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Padrões de Prática MédicaRESUMO
It is widely acknowledged that the growing opioid epidemic and associated increase in overdose deaths necessitates a reexamination of processes and procedures related to an opioid prescription for the treatment of chronic pain. However, the perspectives of patients, including those at the highest risk for opioid-related harms, are largely missing from this reexamination. To partially address the gap, we conducted a pair of one-day public deliberations on opioid prescribing in the context of HIV care. Results included recommendations and perspectives from people living with HIV that detail how providers can best assess patient needs, communicate regarding opioids, and reduce the risk of misuse. Participants emphasized the importance of building trust with patients and taking an extensive patient history prior to making decisions about whether to initiate or end an opioid prescription. This trust - together with an understanding of the origin of a patient's pain, history of drug use and other therapies tried - was perceived as essential to effective monitoring and pain management, as well as promotion of positive health outcomes. Ensuring that such patient perspectives are incorporated into the operationalization of guidelines for safe opioid prescribing may help to improve outcomes and quality of care for people living with HIV.
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Analgésicos Opioides/uso terapêutico , Dor Crônica , Transtornos Relacionados ao Uso de Opioides , Padrões de Prática Médica , Dor Crônica/tratamento farmacológico , Dor Crônica/etiologia , Overdose de Drogas , Infecções por HIV/complicações , Infecções por HIV/tratamento farmacológico , Humanos , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Transtornos Relacionados ao Uso de Opioides/prevenção & controleRESUMO
INTRODUCTION: In response to the US opioid epidemic, the Centers for Disease Control and Prevention issued a guideline (CDCG) for prescribing opioids for chronic pain. Successful implementation of the CDCG requires identification of the information, skills, and support physicians need to carry out its recommendations. However, such data are currently lacking. METHODS: The authors performed one-on-one interviews with nine practicing physicians regarding their needs and perspectives for successful CDCG implementation, including the perceived barriers, focusing on communication strategies. Interviews were audio recorded, transcribed, and a thematic qualitative analysis was performed. FINDINGS: Three major themes were identified: communication, knowledge, and information technology (IT). Physicians reported that open communication with patients about opioids was difficult and burdensome, but essential; they shared their communication strategies. Knowledge gaps included patient-specific topics (eg, availability of/insurance coverage for non-opioid treatments) and more general areas (eg, opioid dosing/equivalencies, prescribing naloxone). Finally, physicians discussed the importance of innovation in IT, focusing on the electronic medical record for decision support and to allow safer opioid prescribing within the time constraints of clinical practice. DISCUSSION: These qualitative data document practical issues that should be considered in the development of implementation plans for safer opioid prescribing practices. Specifically, healthcare systems may need to provide opioid-relevant communication strategies and training, education on key topics such as naloxone prescribing, resources for referrals to appropriate nonpharmacologic treatments, and innovative IT solutions. Future research is needed to establish that such measures will be effective in producing better outcomes for patients on opioids for chronic pain.
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Analgésicos Opioides , Comunicação , Registros Eletrônicos de Saúde , Transtornos Relacionados ao Uso de Opioides/prevenção & controle , Padrões de Prática Médica , Analgésicos Opioides/administração & dosagem , Analgésicos Opioides/efeitos adversos , Tomada de Decisões , Humanos , Naloxona , Médicos , Pesquisa QualitativaRESUMO
Many people with HIV (PWH) experience chronic pain that limits daily function and quality of life. PWH with chronic pain have commonly been prescribed opioids, sometimes for many years, and it is unclear if and how the management of these legacy patients should change in light of the current US opioid epidemic. Guidelines, such as the Centers for Disease Control and Prevention Guideline for Prescribing Opioids for Chronic Pain (CDCG), provide recommendations for the management of such patients but have yet to be translated into easily implementable interventions; there is also a lack of strong evidence that adhering to these recommendations improves patient outcomes such as amount of opioid use and pain levels. Herein we describe the development and preliminary testing of a theory-based intervention, called TOWER (TOWard SafER Opioid Prescribing), designed to support HIV primary care providers in CDCG-adherent opioid prescribing practices with PWH who are already prescribed opioids for chronic pain. TOWER incorporates the content of the CDCG into the theoretical and operational framework of the Information Motivation and Behavioral Skills (IMB) model of health-related behavior. The development process included elicitation research and incorporation of feedback from providers and PWH; testing is being conducted via an adaptive feasibility clinical trial. The results of this process will form the basis of a large, well-powered clinical trial to test the effectiveness of TOWER in promoting CDCG-adherent opioid prescribing practices and improving outcomes for PWH with chronic pain.
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Approximately 25 million people in the United States are limited English proficient (LEP). Appropriate language services can improve care for LEP individuals, and health care facilities receiving federal funds are required to provide such services. Recognizing the risk of inadequate comprehension of prescription medication instructions, between 2008 and 2012, New York City and State passed a series of regulations that require chain pharmacies to provide translated prescription labels and other language services to LEP patients. We surveyed pharmacists before (2006) and after (2015) implementation of the regulations to assess their impact in chain pharmacies. Our findings demonstrate a significant improvement in capacity of chains to assist LEP patients. A higher proportion of chain pharmacies surveyed in 2015 reported printing translated labels, access and use of telephone interpreter services, multilingual signage, and documentation of language needs in patient records. These findings illustrate the potential impact of policy changes on institutional practices that impact large and vulnerable portions of the population.
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Barreiras de Comunicação , Emigrantes e Imigrantes/estatística & dados numéricos , Política de Saúde , Assistência Farmacêutica/legislação & jurisprudência , Assistência Farmacêutica/estatística & dados numéricos , Medicamentos sob Prescrição , Tradução , Adulto , Idoso , Idoso de 80 Anos ou mais , Cidades/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados UnidosRESUMO
CONTEXT: Internal revenue service provisions require not-for-profit hospitals to provide "community benefit." In addition, the Affordable Care Act requires these hospitals to conduct community health needs assessments that involve appropriate stakeholders. These requirements signal government interest in creating opportunities for developing programs that are well tailored and responsive to the needs of the communities served. Gaining meaningful input from residents is a critical aspect of these processes. OBJECTIVE: To implement public deliberations that explore local resident priorities for use of a hospital's community benefit resources to prevent chronic disease. METHODS: Public deliberation is a method of community engagement that can provide guidance to decision makers on value-laden issues when technical solutions alone are inadequate to provide direction or set priorities. Three deliberations featuring presentations by experts and discussions among participants were convened with a cross section of residents in Brooklyn, New York. Participants were asked whether new hospital initiatives should prioritize: clinical prevention, community-based interventions, or action on broader policies affecting population health. Pre- and postsurveys, as well as qualitative methods, were used to assess knowledge and attitudes. RESULTS: Postdeliberation, participants had significant changes in knowledge, particularly on the impact of education on health. Participants prioritized community-based and policy interventions over expanding clinical prevention capacity. CONCLUSIONS: Public deliberation offers a method to probe informed constituent views of how a hospital can best promote its community's health. Informed local residents felt that hospitals should frame health-promoting activities more broadly than is current practice. Not-for-profit hospitals gain significant tax advantages. Increased insurance rates suggest that some hospitals will experience savings in uncompensated care that can be used to promote health more broadly. Vetting priorities for the use of new resources with informed community members can be accomplished through public deliberation. These results suggest community support for nonclinical approaches to disease prevention.