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BACKGROUND: Despite calls for regionalizing pancreatic cancer (PC) care to high-volume centers (HVCs), many patients with PC elect to receive therapy closer to their home or at multiple institutions. In the context of cross-institutional PC care, the challenges associated with coordinating care are poorly understood. METHODS: In this qualitative study we conducted semi-structured interviews with oncology clinicians from a HVC (n = 9) and community-based hospitals (n = 11) to assess their perspectives related to coordinating the care of and treating PC patients across their respective institutions. Interviews were transcribed, coded, and analyzed using deductive and inductive approaches to identify themes related to cross-institutional coordination challenges and to note improvement opportunities. RESULTS: Clinicians identified challenges associated with closed-loop communication due, in part, to not having access to a shared electronic health record. Challenges with patient co-management were attributed to patients receiving inconsistent recommendations from different clinicians. To address these challenges, participants suggested several improvement opportunities such as building rapport with clinicians across institutions and updating tumor board processes. The opportunity to update tumor board processes was reportedly multi-dimensional and could involve: (1) designating a tumor board coordinator; (2) documenting and disseminating tumor board recommendations; and (3) using teleconferencing to facilitate community-based clinician engagement during tumor board meetings. CONCLUSIONS: In light of communication barriers and challenges associated with patient co-management, enabling the development of relationships among PC clinicians and improving the practices of multidisciplinary tumor boards could potentially foster cross-institutional coordination. Research examining how multidisciplinary tumor board coordinators and teleconferencing platforms could enhance cross-institutional communication and thereby improve patient outcomes is warranted.
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Neoplasias Pancreáticas , Investigación Cualitativa , Humanos , Neoplasias Pancreáticas/terapia , Entrevistas como Asunto , Actitud del Personal de Salud , Masculino , Femenino , Continuidad de la Atención al Paciente/organización & administración , Hospitales Comunitarios/organización & administraciónRESUMEN
BACKGROUND: Clinical trial diversity is critical to advance health and health equity. Research addressing the discrepancy between goals of achieving clinical trial diversity and realities of study enrollment remains underdeveloped. OBJECTIVE: This study aims to examine the association between race/ethnicity and clinical trial invitation, participation, knowledge, and sources of influence on clinical trial participation. DESIGN AND PARTICIPANTS: A cross-sectional, observational study using nationally representative data from 3689 US adults (≥ 18 years of age) who responded to the Health Information National Trends Survey fielded from February 24 to June 15, 2020. MAIN MEASURES: Primary outcomes included clinical trial invitation, participation, knowledge, and sources of influence on participation. The independent variable of interest is self-reported race/ethnicity. KEY RESULTS: Respondents identifying as non-Hispanic Black (relative to non-Hispanic White) had higher odds of being invited into a clinical trial (adjusted odds ratio: 2.0, 95% confidence interval (CI): 1.1, 3.7), but no differences in odds of participation were observed by race/ethnicity. Respondents from all races/ethnicities reported that personal healthcare providers were the most trusted source of clinical trial information. Hispanic (marginal effect (ME): - 0.09; 95% CI: - 0.16, - 0.03), non-Hispanic Black (ME: - 0.11; 95% CI: - 0.18, - 0.04), and non-Hispanic other (ME: - 0.11; 95% CI: - 0.19, - 0.02) respondents had lower odds than non-Hispanic White respondents of saying they would be influenced "a lot" by their doctor encouraging participation. Non-Hispanic Black respondents had significantly lower odds (relative to non-Hispanic White) of indicating family encouragement would influence their clinical trial participation decision "a lot" (ME: - 0.09; 95%: CI: - 0.14, - 0.03). CONCLUSION: While personal healthcare providers were trusted sources of information, racial/ethnic minority populations noted lower odds of clinical trial participation influence from providers and family. Thus, it is imperative for the healthcare, government, and industry organizations to build trust in medicine and science.
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Ensayos Clínicos como Asunto , Etnicidad , Grupos Minoritarios , Participación del Paciente , Adulto , Humanos , Estudios Transversales , Encuestas y Cuestionarios , Estados Unidos/epidemiologíaRESUMEN
PURPOSE: The rising cost of breast cancer treatment has increased patients' financial burden, intensifying an already stressful treatment process. Although researchers increasingly recognize the harmful impact of medical and nonmedical costs associated with cancer treatment, understanding patients' perspectives of financial toxicity is limited. We aimed to explore the topic of financial toxicity through the lived experiences of patients with breast cancer from groups at risk of social and economic marginalization. METHODS: We conducted semi-structured interviews with 50 women with breast cancer from four specific groups: Black women, Medicaid enrollees, rural residents, and women age ≤ 40. We transcribed, coded, and analyzed the data using deductive and inductive approaches. RESULTS: Two overarching themes captured patients' experiences of financial toxicity: short-term and long-term impacts. Short-term stressors included direct medical (e.g., co-pays, premiums), nonmedical (e.g., transportation, lodging), and indirect (e.g., job loss, reduced work hours) costs. Early in their treatments, patients' focus on survival took precedence over financial concerns. However, as the treatment course progressed, fear of consequences from compounding costs of care and financial distress negatively impacted patients' lifestyles and outlooks for the future. CONCLUSION: Programs addressing financial toxicity that look beyond early-phase interventions are needed. Specifically, patients struggling with the accumulation of treatment costs and the resultant stress require ongoing support. Long-term support is especially needed for groups vulnerable to financial instability and social marginalization.
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Neoplasias de la Mama , Humanos , Femenino , Neoplasias de la Mama/terapia , Estrés Financiero , Investigación Cualitativa , Costos de la Atención en Salud , Estudios LongitudinalesRESUMEN
BACKGROUND: The overlapping human immunodeficiency virus (HIV) and hepatitis C virus (HCV) epidemics disproportionately affect people with substance use disorders. However, many people who use substances remain unaware of their infection(s). OBJECTIVE: The objective of this study was to examine the efficacy of an on-site bundled rapid HIV and HCV testing strategy in increasing receipt of both HIV and HCV test results. RESEARCH DESIGN: Two-armed randomized controlled trial in substance use disorder treatment programs (SUDTP) in New York City. Participants in the treatment arm were offered bundled rapid HIV and HCV tests with immediate results on-site. Participants in the control arm were offered the standard of care, that is, referrals to on-site or off-site laboratory-based HIV and HCV testing with delayed results. PARTICIPANTS: A total of 162 clients with unknown or negative HIV and HCV status. MEASURES: The primary outcome was the percentage of participants with self-reported receipt of HIV and HCV test results at 1-month postrandomization. RESULTS: Over half of participants were Hispanic (51.2%), with 25.3% being non-Hispanic black and 17.9% non-Hispanic white. Two thirds were male, and 54.9% reported injection as method of drug use. One hundred thirty-four participants (82.7%) completed the 1-month assessment. Participants in the treatment arm were more likely to report having received both test results than those in the control arm (69% vs. 19%, P<0.001). Seven participants in the treatment arm received a preliminary new HCV diagnosis, versus 1 in the control arm (P=0.029). CONCLUSION: Offering bundled rapid HIV and HCV testing with immediate results on-site in SUDTPs may increase awareness of HIV and HCV infection among people with substance use disorders.
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Infecciones por VIH/diagnóstico , Hepatitis C/diagnóstico , Tamizaje Masivo , Adulto , Femenino , Infecciones por VIH/epidemiología , Hepatitis C/epidemiología , Humanos , Masculino , Persona de Mediana Edad , Ciudad de Nueva York/epidemiología , Centros de Tratamiento de Abuso de Sustancias , Trastornos Relacionados con Sustancias/epidemiologíaRESUMEN
Medical mistrust is an important risk factor for many health outcomes. For individuals with HIV and substance use co-morbidities, mistrust may influence engagement with health care, and affect overall health and transmission risk. Medical mistrust can be measured by an individual's mistrust of his/her physician, or mistrust of the medical system. This study examined both types of mistrust among 801 substance-using individuals with uncontrolled HIV infection. The aims were to determine how physician mistrust, medical system mistrust, and discrimination experiences were associated with engagement in HIV primary care. Findings indicated higher levels of physician mistrust, but not medical system mistrust, were associated with a longer time since the last visit to an HIV provider. Longer time since seeing an HIV care provider was associated with higher viral load. This study refines our understanding of the relationship between mistrust and HIV care engagement for a large, diverse sample of substance-using individuals.
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Infecciones por VIH/psicología , Cumplimiento de la Medicación/psicología , Aceptación de la Atención de Salud/psicología , Discriminación Social , Trastornos Relacionados con Sustancias/complicaciones , Confianza/psicología , Adulto , Negro o Afroamericano/psicología , Antirretrovirales/uso terapéutico , Actitud del Personal de Salud , Femenino , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/virología , Hispánicos o Latinos/psicología , Humanos , Masculino , Cumplimiento de la Medicación/estadística & datos numéricos , Persona de Mediana Edad , Aceptación de la Atención de Salud/etnología , Aceptación de la Atención de Salud/estadística & datos numéricos , Estereotipo , Trastornos Relacionados con Sustancias/psicología , Carga ViralRESUMEN
Using baseline data from the NIDA Clinical Trials Network 0049 study (Project HOPE), we performed latent class analyses (LCA) to identify discrete classes, or clusters, of people living with HIV (PLWH) based on their past year substance use behaviors and lifetime arrest history. We also performed multinomial logistic regressions to identify key characteristics associated with class membership. We identified 5 classes of substance users (minimal drug users, cocaine users, substantial cocaine/hazardous alcohol users, problem polysubstance users, substantial cocaine/heroin users) and 3 classes of arrest history (minimal arrests, non-drug arrests, drug-related arrests). While several demographic variables such as age and being Black or Hispanic were associated with class membership for some of the latent classes, participation in substance use treatment was the only covariate that was significantly associated with membership in all classes in both substance use and arrest history LCA models. Our analyses reveal complex patterns of behaviors among substance using PLWH and suggest that HIV intervention strategies may need to take into consideration such nuanced differences to better inform future studies and program implementation.
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Consumidores de Drogas/estadística & datos numéricos , Infecciones por VIH/epidemiología , Análisis de Clases Latentes , Trastornos Relacionados con Sustancias/epidemiología , Adulto , Femenino , Humanos , Aplicación de la Ley , Modelos Logísticos , Masculino , Persona de Mediana EdadRESUMEN
INTRODUCTION: To examine differences in perceptions about community stigma towards individuals with opioid use disorder (OUD) between community members involved in the opioid response (i.e., coalition members) and the general public, and how community geography may moderate this relationship. METHODS: This study administered identical cross-sectional surveys about perceived community opioid-related stigma to two distinct populations in 66 communities participating in the HEALing Communities Study prior to the intervention period (i.e., coalition members, November 2019-January 2020; residents, March-April 2020). Linear-mixed models compared survey responses of populations, including the moderating effect of community rural/urban location. RESULTS: A total of 826 coalition members and 1131 residents completed the surveys. The study found no differences between the coalition members and residents for general perceived community opioid-related stigma. In both urban and rural communities, coalition members reported greater perceived community stigma than residents reported towards medication for opioid use disorder (MOUD), naloxone, and drug treatment as an alternative to incarceration. CONCLUSION: Our findings suggest similar perceived community opioid-related stigma between coalition members and residents, yet differences emerge related to evidence-based practices (i.e., MOUD, naloxone, and drug treatment as an alternative to incarceration) to reduce opioid overdose deaths. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04111939.
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Sobredosis de Opiáceos , Trastornos Relacionados con Opioides , Humanos , Analgésicos Opioides , Estudios Transversales , NaloxonaRESUMEN
Workplace violence in healthcare institutions is becoming more frequent. The objective of this study was to better understand the nature of threat and physical acts of violence from heart and lung transplant patients and families toward healthcare providers and suggest programmatic mitigation strategies. We administered a brief survey to attendees at the 2022 International Society of Heart and Lung Transplantation Conference in Boston, Massachusetts. A total of 108 participants responded. Threats of physical violence were reported by forty-five participants (42%), were more frequently reported by nurses and advanced practice providers than physicians (67% and 75% vs. 34%; p < 0.001) and were more prevalent in the United States than abroad (49% vs. 21%; p = 0.026). Acts of physical violence were reported by one out of every eight providers. Violence against providers in transplant programs warrants closer review by health systems in order to ensure the safety of team members.
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Trasplante de Pulmón , Médicos , Violencia Laboral , Humanos , Prevalencia , Personal de Salud , Encuestas y Cuestionarios , Lugar de TrabajoRESUMEN
Background: Patients with heart failure frequently have significant disease burden and complex psychosocial needs. The integration of palliative care into the management of these patients can decrease symptom burden throughout their course of illness. Therefore, in 2009, we established a cardiac palliative care clinic colocated with heart failure providers in a large academic heart hospital. Objective: To better understand the facilitators and barriers to integrating palliative care into our heart failure management service. Design: Qualitative study using a semistructured interview guide. Setting, Subjects: Between October 2020 and January 2021, we invited all 25 primary cardiac providers at our academic medical center in the midwestern United States to participate in semistructured qualitative interviews to discuss their experiences with the cardiac palliative care clinic. Measurements: Interview transcripts were analyzed using a deductive-dominant thematic analysis approach to reveal emerging themes. Results: Providers noted that the integration of palliative care into the treatment of patients with heart failure was helped and hindered primarily by issues related to operations and communications. Operational themes about clinic proximity and the use of telehealth as well as communication themes around provider-provider communication and the understanding of palliative care were particularly salient. Conclusions: The facilitators and barriers identified have broad applicability that are independent of the etiological nature (e.g., cancer, pulmonary, neurological) of any specialty or palliative care clinic. Moreover, the strategies we used to implement improvements in our clinic may be of benefit to other practice models such as independent and embedded clinics.
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Insuficiencia Cardíaca , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicología , Investigación Cualitativa , Pacientes , Comunicación , Insuficiencia Cardíaca/terapia , Insuficiencia Cardíaca/psicologíaRESUMEN
Background: There are many ways that palliative care can support patients with heart failure, but the role of palliative care in supporting patients who are considering or are already using advanced cardiac therapies is less clear. Objective: To understand referring providers' perspectives about the role of palliative care in the treatment of patients with heart failure considering or using advanced cardiac therapies. Design: Qualitative study using a semistructured interview guide. Setting/Subjects: This study was conducted at an academic medical center in the United States with an integrated cardiac palliative care program. Interviews were conducted with cardiology providers, including cardiologists, cardiac surgeons, and nurse practitioners who care for patients with heart failure and who are considering or receiving advanced cardiac therapies. Measurements: Interview transcripts were analyzed deductively and inductively to reveal themes in providers' perspectives. Results: Five themes were identified about the role of palliative care when advanced therapies were considered or being used: (1) educating patients; (2) supporting goal-concordant care; (3) managing symptoms; (4) addressing psychosocial needs; and (5) managing end-of-life care. Providers suggested palliative care could be a facilitator of advanced therapies, rather than merely something to add to end-of-life care. Conclusions: Cardiology providers recognize the value of integrating palliative care across the heart failure disease trajectory to provide therapy options, support decision-making processes, and provide goal-concordant care for patients considering or receiving advanced therapies. Increasing awareness of opportunities to integrate palliative care throughout the treatment of these patients may help cardiology providers better coordinate with palliative care specialists to improve patient care.
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Cardiopatías , Insuficiencia Cardíaca , Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Humanos , Estados Unidos , Cuidados Paliativos , Actitud del Personal de Salud , Insuficiencia Cardíaca/terapiaRESUMEN
Background: Palliative care integration into cardiology is growing, allowing primary cardiology care teams increasing opportunities to utilize palliative care to support processes such as advance care planning (ACP). Objective: The aim of the study is to understand perspectives of cardiac care team members about the involvement and impact of palliative care on ACP in heart failure. Design: A qualitative study using a semistructured interview guide was performed. Settings/Subjects: Interviews were conducted with cardiac care team members, including cardiologists, cardiac surgeons, and nurse practitioners, at a large academic medical center in the United States with an integrated cardiac palliative care team. Measurements: Deductive and inductive thematic analysis of interview transcripts enabled characterization of themes around the role of palliative care in ACP. Results: Two themes were identified with regard to providers' perspectives about ACP: (1) different levels of comfort with initiating and conducting ACP conversations and (2) different opinions about the desired role of palliative care in the ACP process. In exploring these themes, we characterized four distinct approaches to ACP with palliative care as a novel framework for planning consultation. Conclusions: The different approaches to ACP and the implications for how cardiac providers interact with the palliative care team present an important opportunity to guide ACP consultation in practice. Adoption of this framework may help cardiac providers enhance the process of care delivery and ACP in important ways that improve care for their patients.
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Planificación Anticipada de Atención , Cardiología , Insuficiencia Cardíaca , Humanos , Cuidados Paliativos , Insuficiencia Cardíaca/terapia , ComunicaciónRESUMEN
Background: A major part of the HEALing Communities Study (HCS), launched in 2019 to address the growing opioid epidemic, is evaluating the study's intervention implementation process through an implementation science (IS) approach. One component of the IS approach involves teams with more than 20 researchers collaborating across four research sites to conduct in-depth qualitative interviews with over 300 participants at four time points. After completion of the first two rounds of data collection, we reflect upon our qualitative data collection and analysis approach. We aim to share our lessons learned about designing and applying qualitative methods within an implementation science framework. Methods: The HCS evaluation is based on the RE-AIM/PRISM framework and incorporates interviews at four timepoints. At each timepoint, the core qualitative team of the Intervention Work Group drafts an interview guide based on the framework and insights from previous round(s) of data collection. Researchers then conduct interviews with key informants and coalition members within their respective states. Data analysis involves drafting, iteratively refining, and finalizing a codebook in a cross-site and within-site consensus processes. Interview transcripts are then individually coded by researchers within their respective states. Results: Successes in the evaluation process includes having structured procedures for communication, data collection, and analysis, all of which are critical for ensuring consistent data collection and for achieving consensus during data analysis. Challenges include recognizing and accommodating the diversity of training and knowledge between researchers, and establishing reliable ways to securely store, manage, and share the large volumes of data. Conclusion: Qualitative methods using a team science approach have been limited in their application in large, multi-site randomized controlled trials of health interventions. Our experience provides practical guidance for future studies with large, experientially and disciplinarily diverse teams, and teams seeking to incorporate qualitative or mixed-methods components for their evaluations.
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INTRODUCTION/OBJECTIVES: With the emergence of COVID-19, the transition from in-person care to widespread use of telehealth raised many well-described challenges for primary care providers (PCP). The purpose of this study was to improve understanding of how this increased use of telehealth impacted PCPs in positive ways, and specifically focus on any "silver linings" of using telehealth. METHODS: We interviewed PCPs working at a large Midwestern academic medical center between June and July 2020 and asked for perspectives about the use of telehealth during the pandemic. Verbatim transcripts were coded and analyzed using deductive dominant thematic analysis that allowed for categorization of data and identification of emergent themes. RESULTS: PCPs noted 3 main benefits of using telehealth: (1) demonstrated remote care was feasible, (2) patients expressed gratitude; and (3) payers fully reimbursed for telehealth visits. PCPs also described "silver linings" they perceived for patients: (1) easier access to care, (2) more convenient follow-up care, and (3) ability to get quick specialty referrals. CONCLUSIONS: Study participants offered encouraging feedback regarding the potential for telehealth to offer a convenient and patient-centric alternative to in-person care. As a healthcare delivery mode, telehealth can remove personal and social barriers to care for many patients, but reimbursement parity and more evidence is needed to inform best practices for ongoing telehealth use in primary care. With the continuing use of telehealth, it will be important to monitor health outcomes as well as consider how these modalities may need to be adapted to mitigate potential care disparities.
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COVID-19 , Médicos de Atención Primaria , Telemedicina , Femenino , Humanos , Pandemias , Embarazo , SARS-CoV-2RESUMEN
BACKGROUND: During the COVID-19 pandemic, stay-at-home orders as well as shortages of personal protective equipment forced primary care physicians (PCPs) to transition rapidly from in-person visits to telehealth. While telehealth expanded extensively in a short period of time, research about the consequences of the shift to remote care is lacking. The objective of this qualitative study was to examine how telehealth benefited PCPs and their patients during the COVID-19 pandemic. METHODS: From July to August 2020, semi-structured interviews were conducted with 20 PCPs associated with a single academic medical center to examine their perspectives about delivering care remotely during the COVID-19 pandemic. All interviews were recorded, transcribed verbatim, coded, and analyzed using deductive thematic analysis. RESULTS: PCPs identified several benefits of remote care delivery for both physicians and patients. They indicated that (1) patients were reassured that they could receive safe and timely care, (2) remote visits were convenient for patients, (3) patients were comfortable receiving care at home, and (4) video visits enhanced patient- and family-centered care during the COVID-19 pandemic. Participants also noted that (1) telehealth accommodated working from home, (2) physicians were equitably reimbursed for telehealth visits, and that (3) telehealth promoted physician work-life balance. CONCLUSIONS: Our data provides preliminary evidence that PCPs and their patients had positive experiences with remote care during the early months of the COVID-19 pandemic. Physicians identified opportunities by which telehealth could enhance the delivery of patient-centered care by allowing them to see patients' home environments and to engage family members and caregivers during telehealth visits. More research is needed to understand how to sustain these benefits beyond the global COVID-19 pandemic and ensure patients' needs are met.
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COVID-19 , Médicos , Telemedicina , COVID-19/epidemiología , Atención a la Salud , Humanos , PandemiasRESUMEN
Community coalitions have been leading the multisector response to the opioid epidemic in the Unites States. However, with the medicalization of opioid use disorder and changing health care policies, hospitals have moved to the forefront, becoming more active in collaborating with community coalitions. Little is currently known about how community coalitions view and approach collaborating with hospitals despite its importance for understanding and advancing interorganizational approaches to combating the opioid epidemic. Using data from semistructured interviews (n = 119) conducted from November 2019 to January 2020 as part of the HEALing Communities Study (ClinicalTrials.gov: NCT04111939), the authors examined how community coalition members perceive hospital collaborations and explored the opportunities and challenges of these partnerships. They characterized 3 emergent themes: coalition approaches to collaborating with hospitals, barriers to collaboration, and opportunities for sustainable relationships. This new evidence highlights the value that coalitions place on hospital collaborations, as well as mechanisms that may help support ongoing partnerships.
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Política de Salud , Epidemia de Opioides , Humanos , Hospitales , Ohio/epidemiología , Ensayos Clínicos como AsuntoRESUMEN
OBJECTIVE: To describe changes in characteristics of directors of outpatient opioid agonist treatment (OAT) programs, and to examine the association between directors' characteristics and low methadone dosage. DATA SOURCE: Repeated cross-sectional surveys of OAT programs in the United States from 1995 to 2011. STUDY DESIGN: We used generalized linear regression models to examine associations between directors' characteristics and methadone dose, adjusting for program and patient factors. DATA COLLECTION: Data were collected through telephone surveys of program directors. PRINCIPAL FINDINGS: The proportion of OAT programs with an African American director declined over time, from 29 percent in 1995 to 16 percent in 2011. The median percentage of patients in each program receiving <60 mg/day declined significantly, from 48.5 percent in 1995 to 29 percent in 2005 and 23 percent in 2011. Programs with an African American director were significantly more likely to provide low methadone doses than other programs. This association was even stronger in programs with an African American director who served populations with higher percentages of African American patients. CONCLUSIONS: Demographic characteristics of OAT program directors (e.g., their race) may play a key role in explaining variations in methadone dosage across programs and patients. Further research should investigate the causal pathways through which directors' characteristics affect treatment practices. This may lead to new, multifaceted managerial interventions to improve patient outcomes.